Living With Alzheimer's - or, What Day Is It Again

Confusion just seems to increase

2006-09-03T08:15:00.000-07:00

Mother's confusion just seems to increase. We know it's to be expected, but it's still hard to see. Most days she cannot find her room at all, even if she just came out of it. She also doesn't believe it IS hers when we lead her to it. An interesting new twist has been that she can't seem to see that there is a room there at all, unless the light is on in it. Even a couple of weeks ago, she would just flip the switch on as she entered the room. Now, she seems to believe that it is "outside" in there, because it is dark. We are trying to always keep the overhead light on in her room at all times. Hopefully that will help.

New Challenges

2006-08-23T05:05:00.000-07:00

Each day brings new challenges right now. Previously, Mother did not try to get outside on her own, but I ran an errand yesterday and came back to find her sitting on the porch. Now that is fine in and of itself, she does still enjoy it, but with her walker and eyesight problems, she has always needed help to get out the storm door and get settled. If no one was home, or no one helped her, she would never have tried to go out on her own. My 18 yr old son was home with her, but he had gone to the basement for a few minutes and she slipped out.
So I guess we are back to "if I am not home, one of you must be sitting in the same room w/ Grandma and not leave it until I get back" stage. Or maybe I need to hire a caretaker's helper.... I only had to be gone for 15 minutes though, so maybe I just need to take her with me each and every time I drop someone off at an activity. It is just so disruptive for her to have to get in the car, she doesn't like leaving the house very much.

Can't Find Her Room

2006-08-10T18:37:00.000-07:00

This week, we've added a new wrinkle to our Alzheimer's experience... Mother cannot find her room anymore without help much of the time. Our house is only one floor, with her room being directly off the kitchen, and with an open door into it all day. But she cannot find it because she doesn't think it is hers. Two nights ago, she said "I hope I can find where I sleep... I 've only slept there once. They moved me to a new room and took all my clothes!" Of course, she's been in the same room for over 3 years, etc. She is getting lost inside her own room, too, and cannot find the bathroom that is right inside it. We remodeled our garage when she moved in and built a beautiful bedroom with bath that has a pocket door, to make it easier for her to get in and out with her walker. I'm thinking it is time to put a latch on the door that keeps it open at night (she likes to keep it closed), so that she can see the bathroom from her bed. She has been wandering the house again some nights, perhaps looking for the bathroom.
Today was especially tough. She had another bout of bowel problems, poop everywhere since she decided to throw her diaper (inside out) at the trash can and missed, with it hitting the panelled pocket door and wall.... you get the picture. Most of her day was spent in bed, she was too weak to do much else, but by evening she was sitting in the livingroom with the rest of us and whistling as usual. We'll hope for a better day tomorrow.

Wanting to be in bed a lot

2006-08-02T11:42:00.000-07:00

This week, we're hitting the opposite problem of not sleeping.... now Mother wants to take a nap several times a day. I find her taking off her shoes or already snuggled under the covers, even though it is only 10:30 in the morning. One day, she decided to nap at 5:00 and another day at 7:20, even though she had her usual afternoon rest. It is getting much harder to keep her on a daily schedule. We've done well with that for three years, having breakfast around 8, a glass of Ensure around 10, lunch about 12:30, nap at 2:00, juice or cookies after her nap and dinner whenever I can get it made. With kids still at home, that meal just can't always be at the same time daily. Now, she asking for lunch at 9:30 and doesn't believe it isn't time. I know this is all part of the progression, but staying on schedule was so important to her until just recently... now she doesn't care because "what is a schedule?", anyway. If you show her a clock she can tell you what it is. But she doesn't remember anymore that she has a clock, or to look at it before deciding what to do next.

Sleep Deprived

2006-07-23T17:16:00.000-07:00

Sleep deprived... you see it on the today's show, and in commercials for wonder-sleep aids. But how do you get enough sleep when you need to be on night duty, not sleeping peacefully because of the little pill you took before bed?
Mother was up again last night... I finally fell asleep just before midnight, reading later than I should have because it had been a quiet evening. At 1:00 a.m., I was awakened by her calling "hello, hello" in the kitchen. She was up, dressed, her bed made, and ready for breakfast I guess. Thank goodness she is still compliant part of the time, and was not too difficult to get back to bed. But that didn't help me get back to sleep. I think it was around 2:30 when I finally drifted off.
My husband is of course away on a business trip once again. That has been the pattern lately too, about one week out of every month he is gone for the week. I did talk with him and we agreed it is time to put a lock on her bedroom door, one of those little gold thingys that slides into place at the top of the door. Perhaps if she can't get into the kitchen, she will go back to bed on her own?

Missing Objects, Once Again

2006-07-20T07:18:00.000-07:00

Once again we are dealing with "missing objects" being the main problem with Mother. Yesterday, it was her comb. She used to have four, but if one went missing she was distraught until it could be found. We finally changed to having just two combs (one for each hand), and that worked for a year or more. She could keep track of them because she carries them everywhere all day. Somehow, though, this week, she lost them both. In one bedroom, that has been simplified to meet her needs. After looking for most of the day and enduring the agitation that wouldn't quit, I went and bought five more combs. I decided it would be better to just hand her a new one whenever she needs it. Of course, as soon as I got back from the store and gave her one of the new combs, we found the other one, UNDER THE MICROWAVE. She must have shoved it under there when she came in to sit at the table for a meal, as that is next to where he walker goes.
Today, it's not combs, it's lipstick. She has two tubes. Both are suddenly missing. She cannot be consoled. I saw one yesterday on her bathroom shelf. We have tried distracting her with juice but she gulped it down and went back on the prowl. I have quiet music on now in hopes it will calm her down. Where am I? Back in the office at the computer, where I have a little distance. But then there's the guilt of not sitting with her...

Troublesome Behaviors Explained by Harry Lipscomb

2006-07-19T20:27:00.000-07:00

A very simplified but nicely explained definition of some of the most troublesome behaviors in Alzheimer's patients can be found at http://www.theribbon.com/articles/behavior2.asp . If you are dealing with being a main caregiver, please read it. It is short and to the point, but might be just the reminder you need to get you through another "bad" day. It was written by Harry Lipscomb.

Only half dressed and doesn't want her meds

2006-07-18T06:47:00.000-07:00

It's been another long week... Mother is getting up more frequently at night, although still not terribly often. It's more the worry of whether she will get up or not that is the draining thing. We don't want her wandering in the dark.
A good think - with her needing a walker to get around, my husband says it's kind of like the bell on a kitty that lets you know they are coming. :) She can't sneak up on us in the middle of the night, like I imagine some alzheimer's patients do.
My Dad used to army-crawl down the hall in the middle of the night, a return I guess to his days during WWII. He lived with my sister during his bout with Alzheimer's so I didn't experience that myself.
A new thing this week... even with her jammies laid out on the bed, Mother is getting on the bottoms on, and then wants to go to bed with her blouse on. Sometimes she just stops in the middle of the dressing process, shuts her door, and gets in bed. Our usual routine is to have her dress, then we administer her medicine and take her dentures to soak after she rinses them off. One night she took the teeth and put them in the livingroom, got half undress and crawled in bed before we knew what she was doing. Another night, it took us half and hour to get her to take her evening medicine. She was SURE she had already taken it. We won in the end, but a couple of days later my 10 year old asked "Mom, what would happen if Grandma didn't get her medicine?" Well, actually, I guess not a whole lot if it was only one evening. So maybe we need to think about how necessary it is to win, as long as it only happens once in awhile?

"Had a Dad" Alzheimer's Blog

2006-07-17T17:37:00.000-07:00

"Had a Dad" Alzheimer's Blog -
This is an excellent blog for those who are Alzheimer's caregivers.... check it out

Can't dress alone anymore

2006-07-06T08:26:00.000-07:00

We've definitely reached the "can't dress alone" anymore stage... consistently, Mother becomes very agitated at dressing time. Until recently, it took her maybe 15 minutes to find/lay out her clothes for the day, and another 15 to get dressed. Now, she can't even begin the process. Doesn't know where to look for her clothes. Doesn't know what to put on which part of her body, or what goes over top of what. We have found her going to the hamper to pull out dirty clothes for wearing, throwing away clothes because they "aren't mine", and hiding wet adult diapers behind her recliner. Last week, she didn't open her door and start looking for breakfast early like she has been doing. By 8:30, I opened the door to see what was going on. We had been checking on her through the venetian blind on her door, and she was laying quietly in bed (a good thing, we thought.) When I said good morning, she said "I have no clothes on", and yep, she didn't. Well, the bottom half anyways. Must have removed them during the night, and then wouldn't get up because she didn't know how to find a clean diaper in her drawer and put her jammies on again.
I am wondering how long it will be before she is unable to even help with the dressing process?

Hanging On To A Familiar Object

2006-06-22T08:25:00.000-07:00

I am wondering if anyone else has noticed their loved one with Alzheimer's has a need to hold something familiar in their hands all day? Something they have become attached to in some way. In Mother's case, it is her hair comb. She carries it everywhere, all day long. She combs her hair all day long as well, and WILL NOT be parted from her comb no matter what. We've tried replacing it with other things like jewelry, and dollar store items to sort and search through, but it is the comb that holds her attention. Sound familiar, anyone?

Mornings Get Earlier Every Day

2006-06-21T05:19:00.000-07:00

It used to be, Mother would wake up, check her clock, and rest quietly in her bed until time to get up and join the family for breakfast. Lately, though, she seems to have no sense of time as we know it. Today she was up and waiting for breakfast before 5:00 AM. Everyone else was asleep, but not anymore.

We got her back to bed, but it didn't last long. From then until 8:00, she was up every few minutes. Finally, she came through asking when I take her for her dr. appt. There is no appt. She hasn't been to the dr. since last month. This used to happen sometimes after an afternoon nap, that she would wake up and think something she dreamed was real. Mornings used to be her best time of day but that is changing, I think. It will be a long day today.

2006-06-18T07:26:00.000-07:00

Today is Sunday June 18 ... here are a few comments about what the morning has been like so far. Mother was up very early, something she did not do until recently. She has forgotten to look at her clock to see if it is breakfast time, because she has forgotten that clocks tell time. Standing in her bedroom doorway, she kept saying "hello?, hello?" to see if she was alone. Everyone else was asleep, as is usual early on a Sunday morning. When my 10 yr old came into the kitchen to get some cereal, she asked him "where are the cooks today?". We got her breakfast for her and hoped she would settle for awhile.
Instead, she could not find her clothes for the day. That has been an increasing problem the past few months. Previously she could pick out pants, blouse and sweater from her closet. Today, she said "I have pants and a sweater, what else do I wear?" It took some time to pick out a blouse. At that point, we realized she had no underwear on! She came into the kitchen holding two adult diapers, one dirty, one clean, and didn't know "what to do with them." We got the clean one on, the dirty one in the trash, and proceeded from there.
Next wast toilet paper... they don't have paper in these bathrooms today, she said. We got two more rolls out. She has started using it to dry her hands and face on when she washes them, instead of a towel. We use a LOT of toilet paper. Does she have towels? Of course, but she likes the toilet paper better for some reason.
The rest of the day was similar... by 9:45, Mother was looking for lunch. This afternoon, she asked if she had "brought her clothes here when she moved". This evening she wanted to know if "they charged money to watch movies at this building?". She just can't seem to remember that she lives with a family and not in a senior home, even though it has been 3 1/2 yrs. We finally gave her a piece of paper and told her it was a free coupon she could use to watch the DVD with. That made her completely satisfied! Amazing what works, sometimes...

Living With Alzheimer's - A Daughter's Story

2006-06-17T18:42:00.000-07:00

Today I begin my story of what it has been like to live with a mother with alzheimer's. My story is not unique; in fact, it is repeated every day all over the world, as children attempt to deal with aging parents who have fallen victim to this killer.
Mother was diagnosed with alzheimer's about four years ago. Unfortunately, she wasn't the first one in our family to have the disease. Dad beat her to it. He had early-onset alzheimer's and eventually passed away after a long battle. He did not know me for the last 4 years of his life. So Mother's diagnosis was round two for us.
At the time she was diagnosed, Mother lived in an assisted living home with 230 other residents. She had been there for over 6 years. By the time another year had passed, her living skills had decreased and she was no longer enjoying or participating in the activities as she previously had. The special alzheimer's wing was private pay and over $5,000 a month. With an income of $1,600/month and no other assets, that was not an option, so Mother moved in with us.
We had five of our seven children still living at home when Mother moved in. Having her here required remodeling the house, creating a nice bedroom/bathroom/laundry room from the garage. My husband misses having a place to work on the cars when they need it, but "Grandma's room", as it has come to be called, is a pretty nice substitute. We have a lot of other things belonging to her, like "Grandma's chair, Grandma's plate, Grandma's walker, Grandma's medicine, etc." .... the list is a long one.
What has it been like? Mother moved in 3 1/2 yrs ago, and the road has been mostly smooth with bumps here and there. Lately, it seems to be a downhill road with more bends and twists than before. Par for the course, said the doctor. Expect more of the same ahead. Are we coping with it? Yes. And I can honestly say, it has been a great experience for our family overall.
I'd like to chronicle some of the funny, sad, poignant, kooky things that have happened (and continue to happen) in future postings. For those of you who are in similar situations, they will undoubtedly sound familiar. For anyone else reading this, be prepared - you never know when it might be someone you love who is diagnosed as well.