Our Alzheimer's Journey

A Trip to the ER

2009-08-24T17:16:00.000-07:00

As our LAN line and cell phones rang one after the other last night, we figured something big must be up. And it was. KS called Tracy at 7 p.m. to let her know that Blanche had tripped and fallen after dinner. She hit her head and her knee and as a precaution, KS called the ambulance and had them take her to Waterbury Hospital. The emergency room. On a Sunday night. In the pouring rain. Did I mention on a Sunday night? In the pouring rain?

So we sat with Blanche for about five hours. She was in great spirits. She kept saying how happy she was to see us and how nice it was that we could all be together. She had x-rays taken on her knee and a CAT Scan on her head. It was all good. There was nothing wrong with her. But yikes, it was a long wait. Toward the end, Blanche really wanted to leave, so she started to methodically fold the blankets and sheets that were covering her. It was quite interesting to see the level of concentration she exhibited as she folded first the top blanket, which she then placed at the end of the bed and then the second blanket was folded, and also placed on top of the first blanket.

By then she was down to just a sheet covering her. Tracy kept telling her to leave the sheet alone because all she had on under it was a johnny coat. So she would stop for literally one minute, then pick up the sheet, defiantly stare at Tracy and start to fold it again! It was fascinating to watch. Tracy finally just got up, and unfolded both blankets and placed them back over Blanche so she had to start all over again. At least that bought us time so she wouldn't be just lying there practically naked waiting for the doctor. And it was freezing in the room she was in.

We watched several sets of people come and go. As each one would leave, Blanche would make a comment loud enough for all to hear. She was very nosy. It was also interesting to see her out of her normal surroundings. While she was in good spirits, she literally could not complete a sentence, which was really frustrating to her. She kept telling Tracy she had something to tell her, but she couldn't remember what it was. Tracy told her where she was and why she was there, but she did not respond to that at all.

Interestingly, when we first got there, a nurse came up to Tracy and said that Blanche seemed very confused. Tracy explained that Blanche has Alzheimer's and the nurse said he knew that!? Okay, then, why was he surprised she seemed confused? We couldn't quite figure that one out.

When the doctor finally came, he asked Tracy if in her opinion, her mom was acting normal. Tracy said, "absolutely" and the doctor was satisfied between that answer and the CAT Scan results that she had not suffered a head injury.

So, we were curious as to what would have happened if KS had not been able to reach Tracy. Apparently, the ambulance would have taken Blanche back to KS, so that's good to know.

Hopefully, it won't happen again anytime soon.

Trying to Make Sense of It

2009-08-05T10:58:00.000-07:00

I just got off the phone with my dad's geriatric doctor. I figured if I write down all my thoughts right now, chances are that I would remember more of the conversation. She said it is her feeling, and that of the consulting doctor, that my dad's lack of motivation is being caused by his dementia and not his depression. I can understand that, but it doesn't change my opinion about the need to increase his depression medication.

I told her that I understood her reasoning. However, given that my dad cannot take Aricept because of his past bleeding ulcer issues, and they won't give him Numenda because that's only prescribed in cases of severe dementia (that's correct - that's what she said), I think that a slight increase in his depression medicine might give him some added motivation and wouldn't it be worth a try?

Ruling out Aricept and Numenda rules out the popular Alzheimer's/dementia medication that I'm aware exist. In fact, Tracy's mom is on both of those and I don't consider her dementia to be severe. Maybe I just don't know enough yet about the illness or even the differences between Alzheimer's and dementia.

If I compare Blanche's behavior to my dad's, it's hard for me to see the similarities. Blanche has bouts of paranoia, she makes things up, and she forgets everything a minute after it happens. My dad has not exhibited any paranoia, but he does seem to forget everything a minute after it happens. He does make things up, but not in the same way Blanche does. She tells us of visits she's had recently with her husband, who has been dead for six years. My dad just seems to think he's doing things like he used to do. It's very confusing, but I guess if I re-examine what I just wrote, my dad and Blanche do exhibit similar behavior...

Well, as I was writing, the doctor called back. Hard to believe! She actually gave me a referral to an experimental study that is ongoing at Yale University's Department of Psychiatry. It's an Alzheimer's/dementia study. I think it might be the same study that Tracy and her grandmother participated in when her grandmother was about 95 years old in 2004 or 2005. If I remember correctly, they went to Yale periodically and participated in testing. There were some instances where Tracy's grandmother actually tested better than Tracy did! I better check with her on that to make sure I'm not making that up!

And she then said that if we choose not to participate in the study, or if we do participate and it doesn't seem to help, then they'll bump up the depression medication! After all that. She also said if they do bump it up and it doesn't seem to make a difference, they can always reduce it. That seems to make sense to me, but I still don't get what harm there is in bumping it up now. I think I want to believe the increased medication will help, when I'm hearing these doctors say it won't because my dad is like he is because of the dementia, not the depression. I think we still have to try.

So, we're going to see my dad's primary care doctor tomorrow. I'll do some research on this study at Yale before then and see if I think we can do it. Then I may just tell the doctor tomorrow to tell the geriatric doctor that we want to go ahead and increase the depression medication.

Long Overdue

2009-07-31T17:46:00.000-07:00

This new post is long overdue. I'm not sure what happened to July. It just came and went so quickly. There were several visits to Blanche, the most recent being last Friday. She was very happy to see us and actually said my name. She hasn't said my name in a long time, so it was a nice surprise to know that at least on that day, she remembered who I was. She talked for awhile about how much she likes Kensington Green and how long it took her to decide that was where she wanted to live.

As for other things, her hair was dirty and the handicapped seat in her shower had two piles of nicely folded, dry clothes on it, leading us to believe that the shower had not been used in some time. We unpacked everything from her clothes hamper. Just can't get her to stop doing that. We found her underwear, tucked away in her nightstand and returned it to her dresser. My big find of the evening was the 24 bingo balls hidden away in her bathroom! What a find! I initially thought they were those oversized gum balls that I ate too many of when I was a kid. Glad I didn't try one because I'm sure it would have broken a tooth!

Cleo is good, although she probably needs to be checked out by the vet. She doesn't seem to be able to eat the dry food anymore, so we've been bringing moist food for her. We can't give her the cans because Blanche cannot monitor that and there would be smelly, open cans all over the room.

On another front, I took my Dad to the geriatric doctor on Wednesday and his dementia is worse than it was six months ago. He told the doctor that it was 2005. He also told her he goes out everyday, takes my mom shopping, and jumps in his truck and drives to the beach a couple of times a week! Interestingly, that is exactly what he was doing in 2005, but he doesn't do that anymore. He NEVER gets out of bed unless we make him. The doctors told me there is a great deal of overlapping with depression and dementia and it's hard to distinguish one from the other. I just know that I wanted them to increase his depression medicine to maybe give him a little motivation and I'm waiting to hear if they'll do it.

Living like this is taking such a toll on my Mom. Since she doesn't drive, she relies on my brother and I for everything. And she has to deal with my Dad and his depression and his dementia 24/7. She's handling it as best she can, but I know she is overwhelmed sometimes.

And to all of those health care professionals out there, please heed this word of advice from an average person. PLEASE do not tell elderly people that they should go to daycare! Why would a professional say that repeatedly to an 80-year-old ex-Marine? To him, daycare is a place where helpless little kids go when their parents have to go to work! I actually got the doctor alone and asked her to say "activity center" or "senior center". How hard is that?

I'm trying to stay positive because my mother needs that from me. But it's so hard. This is my Dad - my hero. He's the guy I followed around when I was a kid. It was me climbing the ladder right behind him to fix my grandparent's roof. It was me hauling the wheelbarrow full of stones into our backyard to extend the usable area of our yard. And now it's me taking him to the VA, getting him into a wheelchair and making sure I understand what is going on. It just sucks. And there's no nice assisted living facility waiting for him when the time comes and we can't take care of him at home. There's the VA hospital in Rocky Hill and I have no idea what that place is like. So that's where we are with all of that.

Keeping up with Medical News

2009-07-02T07:58:00.000-07:00

There's an illness that is similar to Alzheimer's and I think it's important for those of us with aging parents to be aware of it. Check out this link for a disease that has many similar symptoms of both Alzheimer's and Parkinson's. The goods news is that it is very treatable once diagnosed. It's called Normal Pressure Hydrocephalus, or N.P.H. for short.

Read the entire article at the link below.

http://www.kauz.com/news/49629637.html

I also posted this to my Facebook page. I just wanted to make sure it gets as much exposure as possible.

Visitors are a Good Thing!

2009-07-01T16:48:00.000-07:00

So in recent weeks, Blanche has had visits from several friends, her roommate from nursing school and a cousin. It's always nice to hear that because in part (and perhaps selfishly), it takes some of the pressure off Tracy given that we were the only two people seeing her regularly for quite some time.

I sometimes wish I could create some type of pamphlet that Tracy and I could give to people to prep them for a visit with her mom. It is so interesting to me that in some cases, not all, Blanche's visitors feel sorry for themselves because they feel as if they have lost a friend and that makes them sad. Well, yeah? Think how Tracy feels. It's her mom who has disappeared right before her eyes, yet still lives and breathes and exists in this world! People are funny like that I guess. The closest I can come in comparison is the person you may know (because we all know at least one), who doesn't go to wakes or funerals because it's too hard on them. Really? What about the people that are burying their loved one? Do you think it's hard on them? Do you think perhaps they need your support at such a difficult time?

Anyway, now it's my hope that the people who have gone to visit her will continue to do that as regularly as they can, at least through the summer.

The other thing that has surfaced because of these visits is that I think the assisted living facility should have regular communication with the family as to how their loved one is doing. Tracy never hears anything about her mom from the facility. They only have about 25 people living in the secured area of the facility. They should be able to generate a report that keeps Tracy apprised of the activities her mom participates in (or addresses the issues if she doesn't participate), the people who come and visit her, and just the overall state of her well being. Sending out something like that just once a month would be a great comfort to Tracy and I'm sure many other families as well.

Other issues we are dealing with relate to my parents. My dad suffers from depression and mild dementia. We were able to get him on an anti-depressant about six months ago. I called a couple of months ago to ask his doctor if we could bump up the dose because he was on a very low amount. They told me no because they were concerned he would suffer side affects and since he wasn't exhibiting any side affects, they left it as it was.

Now, despite all my Dad's promises he made in the fall to start doing more, he only gets out of bed when he absolutely has to. And even then, sometimes he'll take my mom to church or to the hairdresser and not even get out of his bathrobe! Even though he doesn't get out of the car, I am literally distraught that my Dad thinks that is okay behavior. If someone told me 10 years ago that my active, lively, strong father would literally have lost the desire to live I would have said they were crazy. But that is exactly what has happened to him. He is the last left of all his siblings and all his friends. He has absolutely no interest in anything and that is so hard on my mom. She doesn't drive, so she relies on my brother and I if my Dad isn't leaving the house.

I'm going to call my Dad's doctor again tomorrow and request an increase in his medication. Maybe they'll listen to me this time.

All is Well

2009-05-21T06:31:00.001-07:00

Mother's Day lunch with Blanche was excellent! As we drove up Route 6 headed for the Charcoal Chef, we passed one or two horse farms. Blanche was chattering away and telling us how she drives up this way two or three times a week and pulls over to the side of the road to watch the horses. Excellent! I told her that's a great way to break up her day and she agreed wholeheartedly. She was also telling us how much she enjoys "working" at KS. If that's what it takes for her to be okay with living there, then so be it.

Once again, she was showered, her hair was nice, although it needs to be cut. Tracy is working on that. Apparently, she needs to ask KS to set up an appointment the next time they are offering that service.

Cleo is doing fine. She seems quite happy and not at all upset that she has to live in a memory care facility! Her life is pretty basic - she stays in Blanche's room and she eats, sleeps, pees and poops! Not bad. Tracy and I are responsible for her care. So once a week, we change the litter and make sure her feeder is full. Blanche is good about keeping water in the bowl. However, she still tends to try to give the cat little "treats" such as crackers, hand cream, etc. But we try to keep an eye on that. Since she can't have food in her room, it makes it easier to manage.

Last Sunday we took Blanche to the Heritage Village book sale. I went off and did my own thing, but Tracy told me later that her mom absolutely could not focus. She just kept reading all the book titles and never really seemed to find anything she was interested in. Yet, she used to be an avid reader. Tracy picked out a book for her and she had another one for her because we had been to the sale the day before. I highly doubt she is able to read a book anymore, but that's okay.

When we went back to Blanche's room, what a treasure trove of things we found! Apparently, Blanche has been collecting plastic hair clips. We don't know who they belong to, but there were at least a half dozen on her dresser. Isn't that weird? Also on her dresser was a checkbook belonging to someone else. Tracy immediately brought that to an aide and it turned out that it belonged to Blanche's friend, Celia. Why her family would allow her to have a checkbook in the memory care facility is beyond me, but the aide gave it right to Celia.

We're having a Memorial Day picnic on Monday and we've decided that Blanche cannot join us. We think it would be a challenge to keep her out of her old apartment and we don't want her to think she's coming home. So like on Easter when we brought her with us to my brother's house, we'll take her to picnics that are not at our house. I think Fourth of July is at my cousin's, so we'll bring her there with us.

That's about it for now...

The Compulsive Nose-Blower Strikes Again!

2009-04-28T18:49:00.000-07:00

Are you kidding me?! She did it again! We took Blanche out to dinner tonight and even though the napkins were paper and not cloth, AND Tracy gave her a bunch of tissues when we got in the car, it did not matter. With one swift motion, she had squashed a bug on the restaurant window and blown her nose into her napkin! Yikes!

Blanche had been obsessing about a bug on the window at the restaurant. Tracy had told her several times to just leave it alone. Instead, Blanche started looking at a real estate magazine that I had picked up on the way into the restaurant. After pretending to look at it for a moment, she whacked the window and splattered the bug all over the window and the magazine. And then she laughed heartily as Tracy just shook her head.

So, all in all, Blanche was more animated and talkative than I had seen her in quite a while. That was a good thing. However, she seems to have picked up some odd habits. For example, after we had our salads, she took her knife and started scraping up dressing that had fallen onto her place mat. She would not stop doing that, no matter what Tracy said. Finally, she took the knife and licked it and that seemed to satisfy her and she stopped fussing with it.

When dinner came, Blanche did not eat much of it and like always, said she would bring the rest home. Since we can't let her do that, this is one of the only times when it is a blessing that her short-term memory is so bad. By the time we get back to KG, she has absolutely no memory that she had leftovers. One small (and isolated) advantage to the memory issues.

Until next time...

All Quiet on the Blanche Front

2009-03-26T16:53:00.000-07:00

We took Blanche out for dinner last night. She seemed in good spirits, her hair was clean, although it did not look brushed. However, that could be because Tracy received a message earlier this week from Kensington Green that they couldn't find any of Blanche's hairbrushes or combs, so could we bring one the next time we came. So we did, and then we found four of them in her room! I've learned that people with Alzheimer's tend to put things "away". You would think that KG would know that and just look in #1 - her purse, and #2 - her laundry basket.

She uses the purse like a suitcase and keeps everything in there from toothpaste to notepads (usually three or more) to the remote control for her TV. The laundry basket holds everything else in the room that she can jam into it. It doesn't matter that Tracy attached a big label to it that says "Dirty Clothes".

One of the things we really liked about KG was that they had memory boxes outside each room where you could place photos and mementos and other things that would remind the resident of family and home. However, we can't get Blanche to stop emptying that. Yesterday, she finally beat us! We did not even try to put back any of the pictures or little moose figurine that we had been putting in there during every visit. She wins because I doubt we will try again.

We're also getting better at leaving. One time she insisted on walking us to the door and since it's a locked facility, she can only go so far. Then she just stood with her nose pressed against the glass until we were out of her sight and that was slightly disconcerting to both of us. So now we walk her out to the common area and if there's an activity about to start, we make sure she is participating before we leave. Last night there was a tea party scheduled for 7 p.m., so that was when we made our exit.

One of these days we'll also learn that we have to bring tissues with us when we take her out to eat. She is the biggest nose blower I have ever met! Three times now while we have been out eating, she has blown her nose in the cloth napkins before we could stop her! Last night I just looked at Tracy and said, "no really, how stupid are we?" because once again we forgot to bring tissues to give her at dinner... one of these days.

That's it for this update.

Let's Review

2009-02-27T04:46:00.000-08:00

It's been three weeks to the day since we moved Blanche into Kensington Green. And, for me, the sun seems brighter, the sky more blue and food tastes better! It's really amazing to take back our house and to have our privacy, and our lives back. This may sound harsh, but the past year it became very challenging to have to keep an eye on Blanche every single time she came over to our house.
Now we at least know she's safe, well-fed and taken care of every single day. Our biggest challenge so far has been to stop her from packing up her belongings every other day. They're also getting better at keeping an eye on this activity at Kensington Green.
Tracy is going to see her tomorrow. I can't go - yet another family funeral for me to attend. So I'll keep you posted.

Just Nine Days In...

2009-02-16T04:24:00.000-08:00

...and Blanche is still packing up her stuff to go "home". We went to visit on Sunday. We got there at 10:30 and she was sleeping! Just laying on her bed, fully dressed and out like a light. The TV and lights were off and the blinds were closed. And to me, the room smelled. Tracy said it was the new paint, but I just didn't think so. Blanche had her bathroom door closed and when she does that, Cleo can't get into the bathroom. Sure enough, we found a sweater on the floor that the cat had peed on. What also bothered me about that was that there were at least six or seven people sitting out in the common area doing different things with two aides supervising them. As far as I'm concerned, Blanche should have been out there as well.

After we woke Blanche up, we realized that she had not showered in probably the entire week she had been there! Tracy went and told the nurse that her mother had packed everything up again. She had even taken the pictures off the walls! The nurse was surprised. She said everything was fine earlier that morning. I doubted that. It didn't take just an hour to do everything Blanche had done. Apparently she had also been telling everyone at breakfast that Sunday was her last day there and she would be going home. So I guess we can assume she is not adjusted yet.

Back to the shower issue. An aide came in and told Tracy that her mother had refused a shower every single day that week and that she has the right of refusal! Really?! The aide said that everyday Blanche would already be dressed and would tell whoever came in to "cue" her to shower that she was already dressed and was not going to take her clothes off. So I butted in and asked the aide if they can cue her at night to shower instead. She said they could probably change the schedule and do that. What schedule? She's not doing it in the morning, so there is no schedule! I was very angry. These people are supposed to be the professionals.

At that point, Tracy had her mother in the bathroom and was getting her in the shower. Blanche complained that the water was too cold and sure enough, Tracy said the waster wasn't really getting hot. I wouldn't take a lukewarm shower either. We reported that and the aide said maintenance would come in and look at it. Then the aide went into the bathroom, closed the door and made sure that Blanche showered and washed her hair. The woman was great - she even shaved under Blanche's arms. Needless to say, I stayed faaaaar away from the bathroom. There's a reason I'm not in health care!

After that whole drama, I asked the aide if whenever someone comes in to check on Blanche or take her somewhere, if they can please make sure the bathroom door is open so the cat can get to the litter. To me, it's common sense. They know she has a cat; they know the litter is in the bathroom; they know Blanche has Alzheimer's. Hello! We actually hung a curtain in the doorway and then propped the bathroom door open with Blanche's laundry basket. We'll see if that sticks. I just feel bad for Cleo. I'm pretty sure she didn't want to pee on the sweater that was on the floor, but if the bathroom door was closed, she had no choice. And I'm also sure if she keeps peeing on the floor, they'll make us take her back. The rule is that Blanche has to be able to take care of her.

I also noticed something that I did not mention to Tracy simply because she's dealing with enough. It seemed to me that Blanche was less chatty and more distant than she's ever been. It's almost as if she's being less engaged now than when she was living here. It could have been because we woke her out of a dead sleep. We actually had to walk right into the room and stand over her bed before she woke up. She did seem better the longer we were there. We decided to have lunch with her in their main dining room just to spend a little more time there.

Tracy took her laundry to do and we're going to bring it back tonight. We are going to Angela's house for dinner to celebrate Cierra's birthday and we're going to take Blanche with us. We had also decided that when we have picnics this summer, we were going to make sure that we go get Blanche, but now we're not so sure that's a good idea. If she comes back here, she may think she can stay and that will start this whole painful process all over. I think instead we'll just take her to picnics that my brother or my cousins have. That probably makes more sense.

Anyway, so that's been the first nine days and counting. While it's still a huge issue in our lives, the difference now is that when we walk out of Kensington Green, the problem physically stays there and doesn't come home and live with us. That is definitely making a difference in our quality of life here at home.

Moving Day!

2009-02-07T07:52:00.000-08:00

So it's a done deal. It was a long, emotional day for everyone - Blanche, Tracy and me. Even our friend Wendy, who helped me with the movers and packing Blanche's stuff wanted to "get out of Dodge" before Tracy and Blanche arrived at Kensington Green. Tracy had decided to tell her mother mostly the truth - that Blanche's doctor had decided it was better for her to "stay" at Kensington Green because she kept saying she didn't feel safe and felt isolated in her apartment. We never actually said the word "live". We kept telling Blanche she was going to "stay" there.

It went well for awhile. Blanche was confused about where she was and why she was going to stay there. She was happy that Cleo, her cat, was there, already sleeping peacefully in the closet. The three of us had lunch in the main dining room. It was okay, but the portions aren't nearly as large as what Blanche is used to eating.

We are hoping the cat doesn't become an issue. Tracy and I ran home to get some things I had forgotten and when we returned Blanche had put hand cream in one side of the cat's food bowl and had placed a pile of Calcium pills on the cat's place mat! Yikes! We didn't see that coming! So we took the Calcium pills home with us and threw away the hand cream, hoping that would help. We also told Blanche that she needed to just feed the cat plain old cat food or we would have to take Cleo away. That's the first time she starting crying a little.

When Tracy asked her why she was crying, she said "I just want us all to be together". Okay, that made me a little weepy too, but I quickly reined that in. The only real glitch came when one of the nurses came up to us and asked us to contact Cleo's vet and have copies of her rabies and distemper papers sent to them ASAP. Okay, except that Cleo is 16 and she doesn't go to the vet's because she is an inside, only pet. That didn't matter, so we had to make an emergency appointment with our vet and have him give Cleo the shots.

When we were leaving to take Cleo to the vet, Blanche was playing bingo. That was nice to see. We kind of snuck out before she saw us. When we returned, they were just taking her to dinner and as soon as she saw us, she turned to leave the nurse and kind of said, never mind, I'm all set now. We convinced her to continue on to dinner and we would see her later. Then we left, both of us a little weepy and completely drained. Our day had started at 6 a.m. and it was about 5:30 - very long for this type of thing.

We're going to see her today, but just for a little while. We don't want to eat with her again because we want her to get used to eating in the memory care dining room, which is different from the main dining room.

Even though Blanche is gone, I'll try to keep writing this blog because I think there will be much more to share as Blanche gets used to "staying" at Kensington Green.

Bye for now...

The Final Caregiver "Incident"

2009-02-07T07:43:00.000-08:00

I'm a little late with this post, so I'll try to catch everyone up. This past Monday, I was heading outside to chop ice (and yes, I'm really tired of that). As I was leaving the house, I smelled something burning coming from Blanche's apartment. I didn't worry about it because the "I Don't Caregiver" was there and it was her watch.

Later, as the caregiver was leaving and I was still outside, she told me Blanche had burned some bread in the microwave and that it had burned so badly it had melted the plastic rotator thing in the microwave. So I bluntly asked, "where were you when Blanche was doing that?" The caregiver replied, "well I thought she was going to the bathroom and I don't follow her everytime she goes to the bathroom!"

As politely as I could, I said, "well you do have to follow her to either make sure she is going to the bathroom, or to see what she's doing in the kitchen." I was livid because all I could think of was how long did it take to burn something like that in a small microwave? Five minutes? Ten minutes? Twenty minutes? No really! So the caregiver sat on her a** in the living room doing who knows what while Blanche ruined the microwave and smelled up her apartment (and our house) for the next three days. I was really angry and I had to keep reminding myself that it was almost over.

Considering that this particular caregiver has been spending time with Blanche for several months, it is beyond my comprehension that she could allow this to happen. Okay, deep breath...it doesn't matter anymore and I would be hard-pressed to recommend this caregiving service to anyone moving forward.

Now on the moving day...

Friday, February 6, 2009

2009-01-31T00:55:00.001-08:00

Salvation day. Redemption day. Moving day. It is the day we have anticipated for so long. It is the day we remove from our home the devastatingly negative shackles of Alzheimer's. It is the day we move Blanche into assisted living. It is what brings me to my computer at 3:55 a.m. with an aching head and anxiety over how it will all play out. I know it's the right thing to do. There is no other way for this journey to come to its conclusion. But I worry that it's taking a toll on Tracy. She's anxious and stressed and guilt-ridden. It doesn't matter how many people tell her she should not feel guilty. It's how she feels. The only thing that will rid her of that feeling is when we get past that move-in date and Blanche adjusts to her new surroundings. Then the choices we have made for her will be validated.

I try to imagine how our house will be after February 6th and it's difficult to envision. We've lived with this stress for so long. It's like our own twisted version of "When Good People Go Bad". I haven't always been proud of the way I treated Blanche. My patience has worn so thin in the past year. I don't like the person I've become in dealing with Blanche. I don't like how I've let Alzheimer's invade every part of our home.

Okay, so what do I like about the situation? I like that we've given Blanche a safe, warm home for nearly three years. I like that I've learned amazing things about this illness that have allowed me to personally grow and expand my knowledge. I like that because of what I've learned, I have published two articles about Alzheimer's: "Practical Tips for the First-time Caregiver" and "Selecting a Memory Care Facility". I also know that I have more to write on the subject, so good has come out of this.

Finally, once we are over this hump and past this moving day, Blanche will adjust, she will be living in a life-engaging environment and her days of living in near-isolation in our house will be over. That's the next day I am waiting for.

Today's Ordeal Involves a Cup of Coffee and Pudding with Ice

2009-01-19T17:00:00.000-08:00

Today, Blanche asked for a cup of coffee at 4:30. The coffee in the pot was cold, so I told her she could heat it up in a coffee mug. Here's the sequence of events as they unfolded: Blanche took the pot with the cold coffee, and placed it on the counter. As she started to open random cabinets, I told her the mugs were above the sink. She still continued to open random cabinets. She finally got to the one above the sink and took a mug. She poured the coffee from the pot into the mug. Then she poured the coffee from the mug back into the pot. I told her to put it back in the mug. So she did. I then told her to put the mug in the microwave and she asked where that was located. I pointed to it behind her. She put the mug in and I told her to press one. She did. Then she turned around, and took another mug out of the cabinet and asked me if that was where she should put her coffee when it was hot. And on and on and on it goes, everyday, day in and day out. It will all be over soon.

Quick update - Blanche went into the kitchen just now to fill up her water glass. After what seemed like an eternity, Tracy went to see what she was doing. She had taken a pudding out of the fridge and was trying to put it into a cup with ice and water in it! Now the argument gets heated. Not that we are tyrants, but she already had a pudding tonight that she had gone into our refrigerator to get without asking. I'm not proud to say it, but I'm very territorial when it comes to my kitchen. However, the challenge is following her into the kitchen every time she goes and pretending that I am doing something else. Tracy took the challenge this time and now Blanche has gone home with her glass of pudding and ice...

Feeling Sorry for Myself!

2009-01-16T16:45:00.000-08:00

Here I am again - Friday night - 7:45 and I've been dealing with Blanche since 5. I'm not sure how much more I can take tonight. We made a big food mistake today and now I have nothing to feed her for dinner. This morning we gave her chicken wings and a fully cooked pork cutlet. I went over to her place to see what leftovers I could give her and gone - all gone! She even ate the large piece of leftover steak she had taken home with her last night. Tracy is bringing dinner home tonight but she has to work late, so I'm in a bind. I'm not much of a cook and with how picky Blanche is, it's not like I can give her soup or tuna fish.

So here we sit. I went over to her place with her because she wasn't sure how to get there. Then I checked on her food and all she had left was a partial sandwich, which she brought over to our house to eat. Then I noticed all of her trash sitting in various bags on her counter, so I gathered all of that up into one large trash bag. Last but not least, I had to wash out her little garbage pail under the sink because she throws trash into it without putting a plastic bag into it.

Hopefully, if you're reading this, you can understand now why I'm feeling sorry for myself. If not, that's okay too. Finally, tomorrow we're going to see that last place in Southbury and hopefully Tracy will make a decision before the end of this month.

One interesting story from today. Blanche was reading yesterday's New Haven Register and at one point, she jumped up and headed for the door to her apartment. I asked her where she was going (again) and she said "I just saw something important in the paper and I want to go tell my husband before I forget". When she came back, she said to me, "he wasn't home yet".

My response was a plain old "uh-huh" and that was the end of that.

"Something is all screwy...

2009-01-11T16:25:00.000-08:00

...in here," and Blanche pointed to her head. These are the moments where I feel the worst for her. They are brief moments of clarity where she knows something is wrong, and she knows that it's with her, but she can't figure out what it is.

Tracy's grandmother died today. We spent a couple of hours with her yesterday in the nursing home and they had said that they didn't think she would make it through the weekend. They also said they would call us so we would have time to get there. But it didn't work out that way. They called around 8:30 this morning and said she had passed. So Tracy asked if we could go and see her and they said yes. So that's what we did this morning. It was really sad. Her grandmother had just made her 100th birthday on Wednesday. It's a funny world that we live in where euthanasia is against the law, but it's okay to deny a human being food and water, give them morphine to "keep them comfortable" and let them starve to death.

Anyway, Tracy has had to tell her mother about 10 times today that her grandmother has died. She keeps saying that she didn't know and it's been extremely difficult to deal with her today. I've learned that with Blanche and this illness, it's all about her. When Tracy first told her that her (Blanche's) mother-in-law had died, her response was "I was just going to ask you how she was doing." And that was it. No sorrow, no grief, no tears. It's a little weird. It kind of takes away Tracy's ability to grieve for her grandmother. And she needs to grieve because she was the closest person to her grandmother and it's a big loss for her, more than she'll admit.

So here we sit watching football, drinking wine and hoping Blanche goes to bed soon. She already said goodnight once and came back within five minutes looking for something, but she couldn't tell us what it was. I'm dealing with her now because Tracy has had enough for today and she needs a break.

I Have Two Daughters...

2009-01-07T15:04:00.000-08:00

"No", I said, "you only have one daughter." Blanche looked me straight in the eye and said, "no, I have two," and she even held out two fingers as if I am an imbecile and I should know that. Then she said, "How about if I call my boyfriend so we can find out what's going on?" So, I guess it's my turn now. So I said, "why don't you just sit down, read the newspaper and watch the news with me?"

But that wasn't good enough. I've learned that nothing we say is ever good enough, but God help us, we keep trying! Blanche just went back to her house for the 25th time in an hour and I'm not sure how much longer I can be nice. It's pretty sad, don't you think? She can't help it. I should be able to at this point in the game. But she's been telling me stories for over two hours now and I'm about saturated in the patience category. Hold on, I just heard the door again; she's been gone for just about three minutes...and here she comes again.

Okay, she just told me that half of her animals are missing. So I went over to her house with her, explaining that she only has one cat, Cleo. I then showed her Cleo sleeping peacefully in a chair. Blanche insists there are "others"; I insist there are not. And here I am back again in my living room. She stayed over in her apartment, but she'll be back.

Signing off for now, but I'm sure I'll be back too...

Coming Down the Home Stretch?

2009-01-02T13:06:00.000-08:00

So here I sit on the second day of 2009, a steaming cup of Tension Tamer tea by my side and I'm just waiting. For what you may ask? It's 4:06 p.m. and the caregiver just left Blanche. So I'm waiting for the banging to start on the door that connects our house to her apartment. I wish that I didn't waste time waiting for it, but I do. There's a note hanging on the door. It says: "Blanche: I am working today. Please do not disturb me. Come over at 5:00 p.m. and we'll have dinner".

That usually does not stop her, but maybe today will be different.

We went looking at assisted living places earlier this week. Visited two: Coachman's Square and Emeritus (formerly Brighton Gardens). Both are in Woodbridge. We really liked the first and really disliked the second. It was a very sad experience for me; I can only imagine how Tracy felt. I swear, if anything like Alzheimer's ever happens to me, I'll pull a Thelma and Louise long before I become what I now know as "lower functioning".

However, I do know that Blanche is at a stage where she needs to be somewhere else. And not just for our sake, but for hers as well. We can't possibly engage her on a daily basis like she needs to be engaged. A caregiver three hours a day barely makes a dent in keeping her active. She wanders more and more around our house. We've been told that she is looking for something that she will never be able to find. For the same reason that she endlessly unzips and zips her purse when she's in the car with us - ask her what she's looking for and she'll tell you that she'll know when she finds it.

Tracy's sister-in-law is also looking at places in Florida, which is a huge help. Since it's a massive industry down there, we figured that it would be less expensive. And less expensive means that Blanche's money will last much longer for the quality of care she should get. It really shouldn't matter how much money you have when it comes to caring for the elderly, but boy does it! Just from what I've seen, it seems to me that you don't want your loved one to end up in a nursing home, but not everyone has the money to afford the type of assisted living facilities that are geared toward memory care.

Memory care - I learned that it means the facility has a locked area where the residents can wander around without leaving the building or getting into harm's way. It makes them feel like they are still in charge of themselves and since they don't know they're in a locked facility, I think it's okay. Apparently some people think the residents are locked up like crazy people, but those are just small-minded people who really don't understand the illness.

Anyway, an update on Blanche. She is starting to say more and more things that don't make any sense and we cannot decipher. On New Year's Eve, she said goodnight, went over to her house, changed her clothes and came back over. She asked Tracy for the "strips" for her teeth, which she insisted were in our refrigerator. Not sure what she was getting at with that one.

Last night, after dinner, she said she had to get home because her little girl was all by herself. We asked her if she meant her cat, and she said no. So Tracy said if the little girl was over in the apartment right now, she wanted to come over and meet her. So off they went. When Tracy came back, she told me her mother said, "see, that's my little black girl over there" and she pointed to her cat, Cleo.

So, I do feel as if we are coming down the home stretch regarding our living situation with Blanche. I also think that if Tracy had been able to be more open with her brother and his family, they would have understood earlier how difficult it is to care for Blanche. I also understand that we all have our own way of dealing with life-altering situations (this is mine) and really, no one prepares you for caring for a parent who is slowly disappearing before your very eyes. That said, I'm happy that they are providing support now that they understand what has been going on.

We're going to see one more place in Southbury called Kensington Green, hopefully sometime next week. To be continued...and by the way, it's now 4:28 and Blanche has only banged on the door twice since 4:06...

Help! Help! She's Trying to Kill Me!!!

2008-12-19T18:00:00.000-08:00

Yes, that is what I heard tonight from my upstairs office. Preceding this was a combination scream/maniacal laugh coming from Blanche. I really could not tell which it was supposed to be. I calmly walked downstairs to find Blanche sitting on the couch clutching Tracy's hand. Tracy was telling her to let go of her hand, but Blanche would not do that. So I looked at her and said, "what's the matter?" Blanche did not respond to me at all, and finally Tracy was able to free her hand. So Tracy said to her, "I'll heat up a piece of pizza for you and we're going over to your house so you can eat it over there, okay?"

And Blanche responded with "oh I don't think so. I can just imagine what you're going to put in it." Blanche had calmed down once I came downstairs, but after Tracy heated up her pizza and sent her home, she told me what had happened. Tracy was attempting to lead Blanche back over to her apartment because she was wandering around, looking through our mail and generally being a nuisance as Tracy and I were both trying to work on this snowy Friday. (She's a nuisance because she just asks the same questions over and over and over and over, well, you get it.) That's when Blanche flipped out and actually tried to bite Tracy's hand! Tracy held her off and that's when Blanche screamed for me to help her because Tracy was trying to kill her! So that's definitely a new thing and I hope it doesn't last too long.

Yesterday, the doctor started Blanche on medication for her afternoon paranoia, but I'm not sure how long it can take to make a difference. The behavior does seem to be escalating. It starts earlier in the day, so hopefully when we change the caregiver's hours to 1 to 4, instead of 11 to 2, it will give me that additional couple of hours so I can continue to work. Once Blanche starts banging on the door, whether it's 2 p.m. or 4 p.m., my workday is done. She simply requires constant attention because we don't know what she will do when she is in our house.

After she ate her pizza and came back over, it was as if it had never happened. So there we were, Tracy and me, still stewing over this new, big incident, and Blanche had no idea it had even happened. Welcome to our world...

Can I borrow your car...

2008-12-17T17:33:00.001-08:00

...so I can get away? That was the frantic question today from Blanche. She was convinced that "the man" was coming to get her cat. So she rationalized that if I would just give her the keys to my car, she could get away. Blanche insisted that she would take her cat, Cleo, to her mother's house in Shelton and then she would be safe. This is where I get confused. Am I supposed to tell her that her mother has been gone for years? Or do I go along with the charade just to try to get her to settle down?

I had decided that if I just ignore the banging on the door, I could continue working and Blanche would just come every few minutes, bang a little, then go home. But today, she practically tore the door down and combined her banging with screaming "help me, help me." It was horrible.

Today was such a bad day, I can't even write about it anymore.

There's a Police Car in our Driveway!

2008-12-10T16:03:00.000-08:00

So Tracy took me to the eye doctor yesterday. We were gone about three hours. When we got home, it was about 4:30 and there was a police car in our driveway. We walked around to the back of the house, where Blanche's entrance is, and there they were up on the porch, Blanche and one of Seymour's finest. The police officer was taking the screen off of the kitchen window to Blanche's apartment and Blanche was standing there clutching her telephone. She had locked herself out of the house! We don't know how long she had been outside and fortunately it was not cold yesterday.

I asked the officer who had called him and his answer wasn't quite clear. I think he said the lady next door had come over to help Blanche and that the neighbor had probably made the call. I highly doubt Blanche could have made it. So Tracy explained to the officer that her mother has Alzheimer's and he asked if she is registered with the Seymour Police Department. Since we had no idea there was such a program, we said no, but we'll get her registered as soon as possible. It's amazing how easy it is to learn about programs and things available for people with Alzheimer's. I'm being sarcastic here because it's amazing how much caregivers can learn AFTER something bad happens. Oh well.

So after we get Blanche safe and sound back in the house, she spends the next two hours during and after dinner asking Tracy where she was going to sleep that night. I have learned that a rational human being can answer the same question calmly maybe three times maximum. After that, it's going to get ugly!

Tonight, I was by myself with Blanche. The caregiver was with her from 11 a.m. until 2 p.m. At around 3, Blanche started pounding on the new door we put up between her apartment and our house. I hang a sign on that door which is a note to Blanche, which tells her that I am working and she should not bang on the door until after 5 p.m. The sign works great (again, sarcasm). So I just continue to work and fortunately, the pounding is periodic. It only happens every 8 or 9 minutes from around 3 p.m. until I open the door when I am done working for the day. The problem is that I work upstairs in my office and Blanche cannot be left alone downstairs in our house because she does odd things. She feeds the dogs people food, she feeds the cats dog food, she puts things where we are sure to never find them, she goes through (and takes) our mail, and the list goes on and on. As harsh as it may sound, that is why she is locked out of our house during the day.

One more thing about today. After the second round of very loud banging, my phone started to ring. It was Blanche! So she can use the phone, which I don't know if that's good or bad. Anyway, she asks for Tracy and I say it's JoAnn. She asks me when I'm coming home. I tell her that I'll be done working at 5 p.m. and that she can come over then. So she asks me where I am now and where I'll be coming from. I try for the next 10 minutes to explain but it is to no avail. So I finally settle for telling her that we are having dinner at 5 p.m. and I'll come to get her so she shouldn't worry. I told her that I know how to get to her house and that seems to satisfy her.

We hang up the phone and 8 minutes later, she is pounding on the door downstairs again...take two Excedrin and repeat tomorrow...

I'm Not Proud of this Post.

2008-12-06T18:33:00.000-08:00

Two days ago, on Thursday, I yelled at Blanche. And I mean, I yelled at her. We were sitting in the living room having dinner - we eat on tray tables in front of the TV. I know, not the best idea, but with the TV noise, we don't hear the increasingly loud noises that Blanche makes while she eats. Selfish of us, but walk a mile in our shoes before you toss those stones. Tracy was in the kitchen and I got up and brought my plate into the kitchen. As I came back into the living room, out of the corner of my eye, I thought I saw Blanche toss a piece of pork to my dog, Petie, but I just wasn't sure.

So I sat back down and waited for her to finish eating, confident that if she had fed Petie, she wouldn't repeat it with me sitting right there. (Just for the record, we have told her repeatedly that the dogs cannot eat people food). So as I sat there, I watched her put a piece of pork in her hand, but she was eating it with her hand so I still thought it was okay. Then in the blink of an eye, with her left hand, she flipped the piece of pork to Hazel, my other dog. I just lost it! I said, "what are you doing?" She replied, "What?"

I said, "I've asked you repeatedly not to feed my dogs people food and you just did that exact thing!"

"No, I didn't", she said.

So I was so angry, I kept yelling at her. And like a child, she just got very quiet and went back to her apartment within five minutes of my tirade.

What's the point of this story? And I mean that literally - I'm asking you. There is no point. By the time she walked 1 minute back to her apartment she had no memory of our altercation and I was left steaming for the next hour.

So, here I sit, on a Saturday night, still feeling bad, and trying to be a better person about this whole situation. But it is a constant struggle. I know it won't be like this forever and we just have to hang in there and continue to do the right thing and make sure Blanche is taken care of for as long as we can take care of her. It's hard to remember that in the moments when she's tossing pork to my dogs...bye for now.

"The Son Sitting in the Chair..."

2008-12-02T17:14:00.000-08:00

...turned out to be Blanche's cat, Cleo. I found that out when I made her go back to her apartment with me right behind her so I could confront for her all of the "people" that were hanging out in her apartment. We walked in and there was Cleo, sitting in a chair. So I asked Blanche if that was "the son sitting in the chair" and she said yes. Another mystery solved, until tomorrow when I am certain we will repeat the entire exercise again.

Just to digress for a moment, yesterday Blanche told me she had to go back to her apartment because her husband was waiting for her over there. Since he died in 2004, I told her yes, he's waiting for you, but not over in your apartment! (Just kidding - I just thought that. I didn't really say it out loud, although I am tempted sometimes because she would never remember from one moment to the next what was just said.)

Our next challenge will be getting the caregiver that comes in four days a week to actually DO something when she is spending time with Blanche. It's been quite a learning experience for us regarding what professional caregivers say they will do and what they actually do! For example, when we went on vacation in September, we had a full-time caregiver living with Blanche. We had a meeting with the caregiver and the office manager and the liasion to make sure everyone was on the same page and that they knew what to do. Well, apparently even though the office manager was taking notes, she never passed those notes on to the caregiver when it came time for her to stay full-time with Blanche for 10 days.

So when we came home, most of the instructions we had given were not followed and it was extremely annoying and frustrating to think for $220.00 per day (plus meals and mileage), we did not receive the services we were supposed to receive. When I spoke to the office manager on our return, her response was that the caregiver needed to take better notes next time! When I pointed out that everyone was taking notes during that meeting, the office manager just glossed over that and did not really respond. The last thing I have to say is that when we signed on with this company (who shall remain nameless), they put a notebook in Blanche's apartment that they would fill out as a daily log as to what they were doing each day and how Blanche was doing. I ended up having to call TWICE to ask them to please fill out the log everyday as that is our only resource to keep us informed as to what goes on during the day.

The moral of the story here that no matter how reputable the company, or group or person, or how highly recommended they are, it is up to you, and you alone, to keep on top of things regularly and make sure your loved one is getting the care that you are paying for and the services that you are paying for. It's simple really. Hope this helps someone else who may be in the same situation. If you must know the group we are using, contact me privately and I will tell you who they are. I will also tell you that we continue to use them, but we are much more diligent in making sure they do what they are supposed to do.

My Children Are Missing!

2008-11-21T16:43:00.000-08:00

That was today's theme. Starting at 3:30 - well before my 5:30 "stop working" time. I've been getting good at ignoring the intrusions but today Blanche banged so hard on the doors I thought they would come off the hinges. She tried to tell me her children were missing. I explained where both of her children were at that moment - Tracy at work; and her son Rich in Florida where he lives with his family.

Her response? "No, not those children. My little children." Okay, so I said, "you don't have any little children." "You don't know about them," she responded. I just ended up agreeing with her and walking away. No point in carrying that conversation any further than I needed to, right?

Today, I researched facilities where Blanche can go when the time is right. I personally think the time is right now, but I'm not her daughter. I'm not sure what Tracy's take is on it since we have difficulty discussing it most of the time.

Oops - hold on! Blanche just came over asking if my black cat Purr-Cee is her cat. We told her no, and Tracy asked her why she has a skirt on over her pajamas and Blanche said, "what difference does it make?" Ain't that the truth! What difference does it make? Usually once Blanche takes her night pills and goes over to her apartment, she does not come back. But tonight she was more agitated than usual and she came over twice. The first time she was asking for something to feed her cat. So Tracy went home with her to show her the 24 cans of cat food we had bought her on Sunday and that ended that event. So obviously she is still agitated or she would not have come back over.

Back to the assisted living facilities. I found a handful of places in New Haven County that offer "Memory Care Services". It's all so nice and sanitized. The woman is losing her mind and she seems to have more frequent moments of clarity. At least once a day, she flat out says to me, "I think I'm losing my mind", and I just try to reassure her that her memory is not so good these days. What the hell else am I supposed to tell her? I'm no therapist or counselor, but my take on it is that if her family spent more time with her talking about the past and reminiscing with her, she wouldn't be so agitated as much as she is. The problem is the only family that cares is Tracy and despite her many wonderful qualities, patience is not her strong suit. She has a sister in Connecticut, but if she's in contact with Blanche, I'm not aware of it. Given that she's a nurse and must understand how this illness works, she should be in contact with her sister on a daily basis. But Tracy has really been abandoned by her entire family at this point.

I'm not saying that there's only one way to handle someone with Alzheimer's, but that's personally what I would do if my mom or dad had the illness. My dad has been diagnosed with mild dementia and whenever I go visit them, I try to either bring old pictures for us to look at, or I just I just ask him about how things were when he was young. He has much more clarity when talking about the old days than if you try to ask him how his blood sugar was that day.

Let's end this session with the dream I had last night, well actually this morning. I slept poorly, waking about at least half a dozen times. So I slept in a little longer than usual and that's when I had the dream. My entire family on my mom's side was out our house. Blanche was being unbelievably annoying AND she had super-human strength! She tore the door off between our house and her apartment. Then she went to get a cup of coffee and I apparently yelled at her for something and she threw her coffee mug at me! It clocked me square on the forehead. It was so real that when I woke up, I immediately touched my hand to my forehead, expecting to feel a bump. Finally, in the dream, my mom was there to tell me that Blanche had slammed the coffee pot down on the counter and had broken it. Yikes! What does it all mean?

The Repetition is Maddening!!!

2008-11-18T16:26:00.000-08:00

Yes, the repetition is maddening! I think that's the single most difficult part. Blanche doesn't know that between 4:15 and 5:45 today she came back and forth between her apartment and our house 11 times. No really.

The highlight of today was the new drink that Blanche invented. It consists of Diet Pepsi, fat free Half & Half and ice cubes. I tried to stop her but she insisted she drinks that all the time. Tracy was going to make her throw it away, but then we decided it didn't make much of a difference and we simply weren't up for one more argument.

So here we are, it's Tuesday night and I'm sitting in my chair; Tracy and Blanche are sitting on the couch because Blanche once again needed to talk to Tracy. By the time she sat down on the couch, all she could remember was that something was wrong and she needed to talk about it. So we don't know what it is because in the land of the sane, nothing is wrong. It's only wrong in Blanche's world and that my friends is the sadness of it all.

Blanche also said tonight that she needed to run right after dinner because Tracy was coming over to her apartment for dinner. What? Yeah, that's how I feel sometimes - like everyday. The more Blanche talks, the less sense she makes and you try to just carry on a mindless conversation anyway. There is only so much disagreeing, correcting and arguing a person can do in one day. I'm maxed out for today. Hang on while I grab a sip of wine...I drink a lot more at night than I ever used to.

So now the task falls on me to get a list of Alzheimer's facilities and start to call them to set up appointments for Tracy and I to go see. One more thing to add to the unending list.

Sometimes I feel like no one is on my side, but then today the thought struck me that there is one person on my side - Father Time! Father Time is looking out for me and he knows for sure that this too shall pass because everything (and everybody) passes at some point. If he could talk to me I think he would tell me to bide my time because even when I don't realize it, he is in action every single day, bringing Tracy and me one step closer to the freedom we used to have before Blanche moved in with us.

I know that sounds selfish but I challenge anyone out there to walk one mile, or one week, or even one day in our shoes and you will see what I mean. Blanche needs to live somewhere where they will care for her in every regard. There are some days when we are just not nice to her because we cannot take the repetition, the paranoia, the poor hygiene, the intrusiveness and everything else that goes with this illness for one more minute longer.

Even now as I write this, Blanche is talking to Tracy. Blanche says that her daughter Tracy is waiting for her over at her apartment. Tracy is trying to explain to her that she is Tracy and there is no other daughter over in her apartment. So Blanche said, what about my other child? And Tracy said that your other child is Richard and he's in Florida. So Blanche comes back with what about my other little child? Since there is no other little child, that is what Tracy tells her.

So then she asks Tracy, where am I going to sleep tonight? And Tracy says over in your apartment, in your bedroom. And Blanche says okay...and now I'm completely bored with this conversation and I need to go to my happy place for awhile. It's getting harder and harder to get there these days...but I'm counting heavily on my friend Father Time...

The Journey Gets a Little Harder

2008-11-17T12:08:00.000-08:00

I haven't written in a while because, well, because I guess I'm not in the routine of writing in a blog yet. "They" say that it takes 21 days of doing something consecutively to make it a part of your routine. I'm not even close yet.

We've had some truly interesting developments. The "sundowning" seems to have subsided somewhat and is not so pronounced in the late afternoons as it used to be. However, Blanche is giving Tracy a harder time with each passing day. Saturday's argument once again centered around showering and it took Tracy a full three hours of arguing to get her mother into the shower! Not an easy task considering Tracy had hours and hours of work to do over the weekend to prepare for a Monday morning meeting.

Blanche has also started just saying words that don't mean anything - either when she tries to put them into a sentence or just speak them individually. I'll try to listen closer and give you an example the next time I blog in.

I did discover an interesting thing. I put up a sign on the doors leading into our house from Blanche's apartment. The sign used to say: "JoAnn is working today. Please do not disturb until after 5:30. Thanks." Now the sign says: "Blanche - I am working today. Please do not bang on the door until after 5:30. Thanks. JoAnn."

The first day I put that new sign up, Blanche did not bang on the door once! She tried to push her way through the door at least a dozen times after her caregiver left at 2 p.m., but she did not bang on the door at all! Go figure. Maybe if I combine the "do not bang" part with the "do not disturb" part, she'll simply read the sign and go back to her apartment. We'll see. I'll keep you posted.

Until next time...JoAnn

The Fella' Who Feeds Me

2008-11-07T16:05:00.000-08:00

Mid-afternoon brought the banging on the doors to get into our house. I'm becoming numb to it; it's a slow process of desensitizing myself in this particular situation. I headed downstairs around 4:30, an hour before I should have stopped working, but hopefully I'll be able to last longer once my desensitizing is complete. Today we really engaged in conversation - at least I let Blanche talk and talk she did. She was trying to explain to me that the "fella' who feeds me" isn't doing it all the time or doing it right. I explained her to her that daughter Tracy is the one who does most of the cooking around the house for us, and she gave her standard "that's not what I meant" answer and we were on to the next topic.

But then things took a turn. Blanche became very agitated and told me something was wrong but she couldn't put her finger on it. When she first came over, she was clutching her purse and said she was going to go to "the building one over" to talk to someone. I asked if she meant the house next door and she said yes. I asked her if she knew the Polish couple well enough to go over and talk to them. She said no she didn't, but she did not know what was going on, but she needed to talk to someone. I spent about 10 minutes explaining that everything was fine, it was a perfectly normal day and that she did not have anything to worry about. She told me that everything was normal until someone came and killed her dog. I explained that she did not have a dog, she only had a cat, and if that had really happened, Tracy and I would have known about and we would have done something about it.

That seemed to calm her down so I kept telling her in a conversation-type tone that she did not have anything to worry about and she should just have a seat and read the paper while we waited for Tracy to come home from work.

It's getting harder to explain in writing my conversations with Blanche because they are becoming more and more confusing. Tonight, in order to cope, I'm drinking heavily so I don't feel so sorry for myself because this is what I'm doing on a Friday night! I stumbled on a bucket of frozen strawberry daiquiri's in the freezer downstairs - jackpot! This too shall pass.

The rest of our dinner chat focused on a phone "conversation" Blanche had today with her mother. (Yes, you are correct - her mother has been gone for many years). That lead us into a conversation about children, phone calls during dinner and her late husband making faces whenever his mother called them during dinner. Keep in mind that I translate much of this for your reading pleasure because Blanche never actually uses names or identifies people. It's more "he was on the phone making faces" type of thing and I try to guess who she is talking about. A little more alcohol and this could actually be fun for me.

Next, Blanche headed over to her apartment and came back about five minutes later. She informed me that her son was over in her apartment and she just wanted to check and make sure he was okay. I had to cal her on this one, so we went back over to look through her apartment and guess what - her son who lives in Florida was not there! Surprise, surprise...

Well, unless she comes back over tonight, I guess that's it for today. If anyone ever reads this, I hope you get something out of it. Learn how to talk to someone suffering from Alzheimer's. Understand that we cannot imagine in our wildest dreams what they are going through. Little pieces of Blanche's mind are slowly being destroyed. Words are disappearing; people are disappearing (or re-appearing); an apartment empty except for a cat is turning into Grand Central Station with any number of people passing through each day and I envision her brain as one big knot that can no longer untangle even the simplest thing.

I hope that I never again know anyone with this horrific affliction. Bye for now.

It's a Great Day!

2008-11-06T16:45:00.000-08:00

From an Alzheimer's perspective, today was a great day! Blanche started to bang on the door between her apartment and our house at around 3:30, but Tracy was coming to pick her up at 4-ish to take her for a flu shot, so the banging did not last very long. When they came home, we had dinner together and Blanche said goodnight. Saying goodnight and leaving immediately after dinner has become her new MO, which is really okay with us.

So, that's it for tonight!

Mixing Drinks...

2008-11-05T17:02:00.000-08:00

So today's new thing: Blanche attempted to mix her Citrus flavored diet soda with fat free half and half! When I stopped her, she said she drinks it like that all the time. But I stopped her anyway because I was just thinking that cannot possibly taste good. We also went around a few times about the guys that are after her cat. These guys do not exist. It's a part of Alzheimer's called "sundowning", and as the name suggests, when the sun starts to go down, the paranoia about these guys increases. No matter what we say or do, Blanche insists we do not know what is going on over at her place. Can you say frustrating?

And our last back and forth of the afternoon involved me asking Blanche repeatedly to take a shower and wash her hair and her telling me she already did, even though her hair was very dirty. The first time she went over to her place, she came back in 4.5 minutes (I timed it), and told me she had showered and washed her hair. I asked if she actually washed it or just wet it. She admitted she only wet it. Then she asked me if she could use our downstairs bathroom and I told her no and that she had to go home and take her shower in her own house in her beautiful walk-in shower. She said she did not know that she had a walk-in shower and she toddled back to her house for the sixth time in about 20 minutes.

And at the end of the day, when Tracy came home, she had to walk Blanche over to her house and escort her into the shower in order to get her body washed and her hair cleaned. So all my efforts were for naught. One of these days, I'll figure it out. I always feel like in the moment I can make a difference. But I can't and I need to accept that and stop wasting my time.

The final event for today - Blanche picked up her night-time pill case and told me she had a broken nail and she wanted to use the pill case to fix it. So, I took the pill case from her and gave her an emery board. She used that instead, surprise, it worked better!

That's one of the things about trying to help people with Alzheimer's. It's easy to lose sight of the fact that people afflicted with this illness are still human. I find myself becoming very detached and saying things to Blanche that I normally would not say to someone not suffering from this illness. I also talk to her exactly like I would to a child. I also have started to desensitize myself to her situation and that's not good either. I need to have more patience, not less, because the situation is not going to get easier any time soon. I am optimistic that writing this daily blog will help me get things off my chest and allow me to cope better.

Thanks for reading. Until next time...

How it all Began...

2008-11-04T16:39:00.001-08:00

2006 - it seemed like a no-brainer at the time. My partner's mom, who was widowed and living in Florida, had been diagnosed with Alzheimer's. It was clear that she could not continue to live alone so Tracy (my partner) decided it was best to discuss the situation with her brother, who lived about 20 minutes away from their mom in Florida. The decision was to sell Blanche's townhouse and split the money between them. They would each build an addition on their houses - his in Florida and ours in Connecticut. Blanche would live six months of the year with us; and the warmer six months with her son, daughter-in-law and two granddaughters.

This idea survived for about two weeks. Tracy received an email from her sister-in-law saying that she did not think it was a good idea for Blanche to live with them as she would be too "isolated". Right - with her son, daughter-in-law and two granddaughters. So, we stepped up and put a 640-square-foot addition on our house. It is a complete in-law apartment and is really very nice. So in August 2006, Tracy went to Florida, packed up the contents of the house and put them on a moving truck, loaded her mom and Cleo, the cat into her mom's car and drove to Connecticut.

From that point forward, the journey has been much more difficult than either of us could have imagined. We were warned by some family and some friends that what we were planning was a bad idea. But we know even today, that it was the right thing to do. Blanche was not ready for an assisted living facility in 2006. She was still driving and was highly functional. I will now try to add to this blog on a daily basis for two reasons - maintaining my sanity, and maybe giving some insight to others who are just beginning the same journey.