I've been reading a lot on the alzconnected spouse forum. For years I have wondered what is the point of figuring out which type of dementia hb might have. The prognosis and ( lack of) treatment seems to be the same.
With some of the latest posts there are some issues for each type that can be crucial. My hb has Alzheimers.type, but those with FTD or Lewy Body might want to go over there. I think they said that there are some drugs that work well for Alzheimers but can be fatal for Lewy Body. And there are major differences in behavior with FTD that can lead to inappropriate placements in terms of level of care needed. And some with EO have trouble finding placement at all because they are so much younger and stronger than 80 year olds that any aggresssion can be more dangerous to everyone.
Good post, bhv. Thanks, everyone, for the birthday greetings. Much appreciated. I enjoyed the day. I had lunch at the Senior Centre at our local Community Centre: chicken, m. pots., mixed veg., gravy, and an egg custard tart. (We’re celebrating Chinese New Year’s with our large Chinese population here in Vancouver.) The friendship table where I sit sang happy birthday to me. Then I went to two different libraries looking for a particular book (found it), parked at a garden shop while I bought 2 pairs of shoes and 2 pairs of socks, had strawberry cheesecake and tea at the nearby White Spot, went back to the garden shop to buy a cyclamen plant to make up for parking there, told them it was a birthday present for me, whereupon, in spite of my protests, they gave it to me with their best wishes. Went to drug store and mailed a book to Australia ($23.00) and bought 2 quarts of 2% milk), cheaper than in the supermarket. Off to green grocers to buy 7 oranges and 6 bananas. Home to find an email from my non-communicative daughter and later, a phone call from my youngest son. Read my book before going to bed, slept from 10:30 p.m. to 7:30 a.m. Now, this morning, I’m practicing with my new keyboard, and you are my target readership, hence all the details. P.S. Roads clear, snow held off yesterday, we may get flurries later this morning. If not, back to the Senior Centre for lunch.
I am looking into medical alert braclet for my AD wife and a caretaker Ad alert bracelet for me. they all seem expensive. Any good experience by anyone and information?
I have put business cards in wallet but that is not too good in a wreck if wife is OK.
We had both but last year I lost my bracelet (had to take it off for medical test) and could not afford another one. I still have it for my husband -just renewed today at $39.99. But his doctor wanted him to have some type of ID on him he could not remove in case he wanders off.
Today at Day care he was evidently playing with his glasses and broke one bow off completely -can't be fixed. So now he can't wear them at all. They called me to let me know they were broken. She was relieved when I told her he had broken the ends of each bow off already. I think he is starting 'sundowning', unfortunately there is not a lot of space in the MH to pace. Between asking me every 5 minutes about how many dogs and cats we have (I figure he is remembering back in the 70s when we had 2 dogs and a cat), playing with his glasses (he still is) and the pacing he is driving me nuts! - nutter than I was.
I did find out from my case manager at Aging and Long Term Care that I can get 1 or 2 more days of day care that they will pay for. I hate getting up early (7:45) but have to be up by 8 for the dog, so I probably will go for Tuesday which would make Mon, Tue, Wed and Thurs. I won't do Friday because that is the day they pick him up around 8:15 and often do not drop him off until 3:30 or 4 which means he is on the bus a long time.
Great women's gold medal hockey game. It was so exciting and a nail biter. I kind of feel sorry for Canada cause they played a great game and are not use to loosing. But, the USA women also played a fantastic game and deserved the gold medal.
finally getting a little snow. The west side, the mountains (which is great) and north and south of us have, but it has missed us - only the cold down to 20 at night, but now it has snowed lightly. Dog did not like walking in the little bit of snow but the cat loved it. Will be interesting to see how much we get.
Rodstar, What I did was go on line and find a health warning packet that fits onto the seatbelt and bought two of them, one for each seatbelt. In it I put the information about the both of us, and said there was more information in my handbag. It listed our doctors and hospitals, who were healthcare proxies and how to reach them, our various diagnoses, all our meds, and I repeated in various ways that in no situation was my partner to be left unattended and why. I also had all this information posted on the refrigerator as well. I was afraid that something might happen and I would not make decisions for her. Thankfully they never had to be used. I do have to use the caveat that I never had to worry about my partner wandering more than a few fee from the house alone.
P.S. I may have gotten this idea from this website. :)
Charlotte, good for you for getting Art into more day care. I remember those days and you need every hour you can get.
Do you think your husband would play with one of those fidget spinners? They were developed for kids with ADHD to keep their hands busy and maybe having something in his hands would help with the sundowning, pacing, anxiety.
Others who know more about fidget spinners, what do you think?
i bought one when Walmart had them on clearance for $1. I think it is fun and the cat loves it. I put some two sided tape on it and stuck it down. She will go up to it and spin it.
Myrtle, today I'm housebound because of snow and ice but received the book, "Two Gardeners: A Friendship in Letters" from Amazon. It's just right for me: the kind of book you can dip into when you have time, carry in your purse or take to bed. A cozy book. I love it. Thanks for your recommendation. Reading about bulbs and garden in the dead of winter is a cheerful thing to do P.S. Glad your book arrived okay.
Bhv exactly what I feel I am facing Lisa is younger and facility wants her out. They say that Lisa has been aggressive hitting biting, yelling but really she bites because she thinks it is food, she has lashed out a bit but has also been punched when she has yelled. This by the way is getting better the cannabis oil I think is having a positive effect. It could also be because she currently has 1 on 1 all the time. However right now they say she cannot stay and I agree the placement is not right too much stimulation. The placement person says she cannot place her in another facility until she is more stable so referred to tiertiary care. The tiertiary unit that is most suitable and close says they have two other residents that are yelling etc so bringing Lisa wouldn’t work for them right now. So she is on a list for one that is about an hour and a half away but there are 4 people ahead of her so could be awhile. In the mean time to keep her where she is I have to provide the 24/7 companion. The facility has managed to get the funding so far to pay for most of the night shifts I figure my bill for this month including the facility will be around $15000 if next month I have to pay the whole shot will be closer to $25000 this is crazy. The alternative she goes to the hospital which would not be good for her and I do not want that to happen. Feel like I am caught between a rock and a hard place. I will do what I have to do it just does not seem fair or just. I am frustrated.
The Olympics - this year the women's hockey and curling have been so exciting. I think maybe cause Canada is not dominating so other countries are shining. I started watching curling when we lived in Seattle in the 70s. Our cable included a Canadian station (great because we got to watch 'Hockey Night in Canada') where I started watching it. I have Facebook friends who never watched it much or paid attention to it, are really enjoying it this year. The South Korean women are so entertaining. Right now they are playing Japan and both teams do a lot of laughing/giggling but you can see their minds working on strategy. Can't forget that exciting gold medal game between Canada and the USA in women's hockey. Celebrating with the USA women but I always feel bad for the looser when the game is played so good. Great players on both teams.
Nicky, there are serious flood warnings in the area. We've had rain for days and all the snow is gone. All the water is very high and we've had some road closures in lower lying areas. I'm on a bit of a hill (at least for around here) and so flooding isn't possible. All the houses around me are lower than I am. My issues are lightning and winds. It's serious though and it's the kids that are at risk with all the swollen rivers around here.
Rona, I'm sorry to hear that. Could you get her meds adjusted so that she is more docile? I faced this with Dianne and they tinkered with her meds to frankly put her in a more dozed state. It felt worth it as a trade off. Good luck.
Charlotte, I watched that game along with a fair bit of the Olympics. It was a great game and will probably help women's hockey get more established. It was disappointing for us but there's no regret in losing a game like that - and if we want that rivalry to continue, then we each have to win. It was great win for the USA women's hockey team in a hard fought match that was everything it was billed to be. I loved the twins.
I also watched the Falcon rocket go up yesterday. That was just a normal rocket launching a commercial satellite but they usually explain more about what's going on. Yesterday's launch was in a low polar orbit for a satellite that's going to bring the internet to geographical regions that don't have access because they're too remote.
Rona, I'm sorry to hear what you're going through. I agree with Wolf, could they not give her meds to control her aggression?
My husband is on a daily dose of meds to calm him down, but a couple of evenings ago, my husband wanted to choke one of the male residents, because he was sure that resident wanted to kill his girls (I think my husband was thinking of the granddaughters - not sure). The nurse tried to talk to him & calm him down, but to no avail. My husband kept saying "it's true, leave me alone". He then slapped the nurse, which is something he had never done with her. So, she gave him more meds - the ones prescribed by the physician to be given "as needed" when such a situation arises. It's very sad, because we know that man did not want to kill the girls, but in my husband's mind that was real. Would we not have reacted in a similar way if we thought our children or grandchildren were in danger? I'm not defending his actions, but it breaks my heart knowing he must have felt scared.... at least he doesn't remember.... And the other guy doesn't remember either.. poor guy, had no idea why my husband wanted to choke him!
Thanks guys we have been continually trying to adjust the meds. Nicky they were doing the same thing giving more meds to try and address the situation then the Nuerologist said not the answer sometimes giving more meds just exasperates the problem. The combination causes them to be more agitated. So we switched to the cannabis oil, think it is paying off as she is not yelling out all the time and seems calmer but it does take awhile to get the full effect. They increased the dose again earlier this week so I am just hoping it will work and that we will not have to go the tieriary care route and we can get rid of the 24/7 companion we are just not there yet. In the mean time We are stuck in this limbo.
Rona, I didn't know that giving more meds can exasperate the problem & cause more agitation. As far as I know, this solved the problem - at least for the time being. I must keep an eye on that & keep myself informed on his behaviour. Thanks, Rona for the info. I'm glad to hear the cannabis oil seems to be helping - I've hear good things about the oil. Yes, it would nice to get rid of the 24/7 companion - it's costing you a fortune!
I've been thinking about this, too, Rona. Surely you can't keep spending those amounts of money on an ongoing basis--they must realize that. It's true that sometimes patients can have a paradoxical effect from their meds--where the meds have the exact opposite effect than is the norm. But the solution is still going to be medication adjustment to control the behaviors--maybe trying different meds. I hope the cannabis oil has the desired effect--I have never seen it used in the States, so don't have any wise counsel to offer.
Hi mary75*, I'm glad the book suits you and I appreciate the one you sent to me. There's something about receiving a book in the mail that seems so civilized. I'm eagerly awaiting the day when it will be warm enough so we won't have to read either in front of the fire or under the covers.
Rona, I'm so sorry you are having to deal with this. The financial outlay alone is shocking.
Rona, I had an outside aide who came in daily to shower my husband. I found that the facility aides, knowing the personal aide would be coming in (late afternoon), would put off husband's personal care to a disgusting degree. Facilities are all to happy to offload their jobs to someone who the caregiver is also paying. Be aware of this, and make sure that the facility is providing the care for which you are paying.
That said, I understand why the aides did it. They are paid minimum wage and expected to do a lot of care for a lot of people with little training. It is a Catch 22 for everyone except the stockholders in the facility corporation.
At the least, you should be pointing out to the administration that you are paying a lot extra to make things work and they need to step up with help and a dash of gratitude on their part. You know the old saying, "The more you do, the more you are expected to do."
Myrtle, I had always liked Julia Child, and last year I found the most relaxing and healing thing I could do was watch one of her DVD’s (from the library). There was something about her cheerful, common sense approach and her love of good food and cooking that were just what I needed. I love the book you recommended, and this one is somewhat similar, though much longer. Book Review - As Always, Julia - The Letters of Julia Child and Avis ... www.nytimes.com/2010/12/26/books/review/Kummer-t.html Dec 24, 2010 - “As Always, Julia” is an epistolary love story, a romance that began with a fan letter and the gift of a paring knife. The letter was to the writer and historian Bernard DeVoto, who had written in Harper's about impossibly dull stainless- steel knives. The fan was an ambitious American cook, Julia Child, then ...
I am so ticked off. I have medic alert for my husband. Last year we went through this headache of them auto charging the credit card I used the first year. They did it again this year despite the fact they were suppose to turn off auto charge. I paid it on the 21st but it was not due until 3/18/18. I was checking cc today and guess what was there? On 2/22 they charged it through. Of course this is Saturday so there is no one there to yell at. They are so irresponsible in their finances, makes me wonder how reliable they are in the medic alert side.
VA agreed to send him new glasses. If he breaks the next pair, which I am sure he will, as much as I hate to that will be it.
Tuesday is the Alzheimer Caregiver meeting. I will try the respite - a woman coming in for 4-8. That will leave me the ability to hopefully beat some of the traffic and not rush home. We will see.
I have a question for y'all. I have a super dependent clingy wife who does not want to be any where without me. I Have just begun hospice offically. It is going to be hard to get her to let go of me. Even with our adult daughters an hour was tops. We live in an ALF. No crafts,cards, bingo for her. Three weeks ago i tried going to a doctors appointment by myself with daughter staying in room with her. That lasted a half hour. she thought I was hiding something. I got back, a new day. She follows me around our two rooms. You all right can be herd frm a bath room trip. She forgets every thing except me. No escape.
So, when i do get help what do yo suggest I/we do?
Anytime hospice is visiting, go in the other room or take a walk. See if they can help you setup some respite. If your daughter can't handle your wife's insecurity, try to find a caregiver that will. Maybe the place you live knows of someone that can come give you a break, then take it without guilt. IF they are experienced they will know how to deal with her when she becomes upset when you are gone.
Carol - I tried to find the CC info in our account and could not. If I could I would delete it or if they had to have one change the number so it would not work. I have done that before.
Today was going good until I decided to empty the tanks. Our black water (the toilet) has a flush in it to help flush it out. I hook the hose up and let it run to fill a little more so when I pull it hopefully it will help the water run faster and clean out. I told him I was going out to drain the tanks. When I turned the water on, I went to listen to make sure it was running and heard the toilet flush. After I was done I went into the MH and the smell was horrible. When he flushed, the gases instead of going out the vent pipe came into the MH. Smelled like I was inside the sewer. I was not happy and the night just kept getting worse. He went in to bed, made it and tucked the blankets in all along my side. Now, I was getting good at letting it go pulling out myself. NOt tonight - I made him come around the bed and pull it out which did not make him happy since he claimed he didn't do it.(sound familiar?) He is now in bed, I am watching When Calls the Heart and dread going to bed. Oh, how I wish I had a couch to sleep on.
I cant seem to get out of the loop I/we are in. Hb is shadowing me worse and worse. I put on something for him to watch and go outside for a little quiet time alone. 30 seconds and there he is trying to "help". Every time I start to think I should be magnanimous and find something to do together, he does something so counterproductive or even destructive that I just want to leave. Yesterday I completely lost it when he spit out the pills I gave him. It's not even meds any more. Just lactaid and immodium to try to stop the diarrhea. It's been working by the way. Only three problem days this month and they were contained by the depends. So I was finally feeling like some progress when he spit out the pills. Thankfully he swallowed them today. Last night and tonight he went to bed early, but keeps coming down here. He wants me to go up there. I refuse. He goes up there. Can't figure out the bedspread or the lights so I go try to get him settled again.
This is just pitiful. He wants someone to be lovey dovey and cuddle and entertain him all.day long and I can't bear to do it. I was never that way even when we were "happily married".
One of our favorite country songs is "Attitude Adjustment". That's what I need. Or maybe a lobotomy.
Rodstar, I don't know your ALF, but here are a few suggestions that might work.
The aide could perhaps play hide and seek. "Are you looking for your husband? Maybe he is in the bathroom. Let's go look. Nope. He's not here. Have you checked the bedroom? Let's look again. Nope. Not here. You know, perhaps he went to the coffee shop. Let's put on our coats and head over there. Oh, my goodness. I'm exhausted. Maybe we could have a cup of coffee first and rest our feet. Then we'll go walk around the building and see if he is there. What about the beauty parlor or barber shop? Do you think he might be there? What about the bingo hall?" Have her repeat these journeys three times if it is working or until she is tired. I know this has worked for some people. It did not work for me because I live in the city and I could not have aide "running away" with my partner like I would do with her if she was adamant about leaving. But if your facility has different places to search? Letting her get tired can alleviate some of the anxiety hopefully as well as pass time.
After she has gotten to know the aide a bit, perhaps you and she could take your wife to the beauty parlor for a shampoo and cut, and then the aide could bring her home.
"I need your help," is another game that sometimes work. "Let's get these towels folded before your husband gets home". Or do these dishes. Or wipe off the sink and stove.
Playing with dolls or folding and unfolding baby clothes can sometimes pass time. I have a long list if you wish one. I don't usually suggest this stuff for spouses because we are already involved with sufficient activities of daily care that "make up work" could drive us over the edge.
I know short attention span may make some of these activities last for only a short time but they can sometimes be returned to several times.
BHV, I do not really have much helpful to say. I only survived by having my partner in daycare. Only then could I do anything except care for her. I did not care if she liked going. I did not care if all she did was sit in a corner doing nothing. I did not care when they had to assign a person one to one with her. I was totally for preserving myself. When she was gone I could clean house, run errands, visit friends, take care of the yard or do nothing at all. My choice.
When she was home all my activities had to be suspended because of her shadowing and dependence. I did take her for drives, for walks in our local parks and gardens, and we'd go grocery shopping and to church. Until we couldn't any more. That was pretty much it. And that was why I had guests over for meals (cooked while she was in daycare). Providing this kind of care with no help is crazy making. I so get that. If I had one suggestion it would be get help. Keeping you in my thoughts and prayers.
Yesterday was my birthday & I was worried I'd get emotional because it was my 1st birthday since my husband has been in a facility. But, I had this gastro bug & I spent my day in the bathroom. So, definitely no lonely emotions....
I remember when my husband would shadow me - unpleasant situation. He'd want me to go to bed at the same as him, but I needed "my time" alone to watch TV. So I'd go & lie down beside him & wait the few minutes he'd take to fall asleep, then I'd get up & watch TV. Also, a few times while I was in the bathroom getting ready for bed, he'd fallen asleep so I went to watch TV.
I tried sleeping in the spare bedroom, but that didn't work. He'd wake up many times during the night & come & find me. He'd turn on the light - I'd tell him to turn it off, he would but he'd be back & do the same thing over & over again, all night. I actually slept worse in the spare bedroom, because at least in our bedroom he didn't turn on the light.
It's unrealistic to expect to solve a demented person's problem behaviors by reasoning with them. You have to outwit them, which should be possible given that their intelligence is declining and yours is not. Another strategy is to persuade them by being nice to them. Supposedly, the desire for love and acceptance are basic human needs, so if you can fake it by putting a smile on your face and a friendly tone into your voice, you might be able to get them to cooperate with some small things. A third strategy is tire them out, so they are ready to sleep at the end of the day. A fourth one is giving them drugs, such as Ativan.
As for tactics for specific problems, most pills can be crushed and mixed in with something the person likes, such as ice cream or apple sauce. Or they can be squished into a small "sticky sandwich" (PB&J or gooey tuna salad). Refusing to take pills, or pretending to take them and then spitting them out, is common with demented people, so you might find other suggestions in old threads on this site.
The only effective way I know of to deal with shadowing behavior is to get another person's help, whether that help is a day care provider or an aide who comes to the house to be a companion. Whether the demented person wants this help is low on the priority list. Unless you have unlimited means, the help you get depends on what you can afford or what benefits are available to you.
I agree with Myrtle, a nice tone in the voice works well, but sometimes it's hard to do, but well worth the effort. A nice tone is easier to achieve if we can get a break & not be at our wit's end..... However, I remember a few times when I was using a nice tone & my husband would mock me - well, it was certainly difficult for me to continue that nice tone.... I guess it sounded phony to my husband & maybe that was why he mocked me??
Thanks my friends. He finally stayed up there. When I went up I couldnt bear to sleep in there and slept in my safe room. Didn't lock the door but he didn't find me. I slept forever. Hardly moved. Woke up and decided to try not being angry with him any more. I mean, yes, I know it doesn't do either of us any good and it isn't either of our fault, but for several.days I haven't been able to smile. Came downstairs with great intentions. Go outside to get paper and, low and behold, the full trash cans have wandered back inside the gate all by themselves! Good intentions down the drain. Came inside to find him happily in the kitchen wondering what "we" are going to do today. So I plastered on a smile and calmly and cheerfully told him how unhappy I was that the trash cans couldn't stay out by the street where they belong and how unhappy I was that he keeps undoing everything I do. Since he doesn't appear to understand english any more, since I.said it all in a happy tone of voice, he thought everything is just peachy keen again.
Wednesday evening I am going to the adult day care place for a support group.and will have him stay on the other side for respite as a test. Last summer when I visited I thought he would never.tolerate it. Now, it just might work.
Charlotte, I wish you had a.spare room or couch too! Did you make it through the night?
Good idea about crushing the pills. I ciuldnt think of something he would not refuse. A PB&J would do the trick!!! But he did swallow them yesterday. When he spit them out I apparently didn't use a nice enough tone of voice. Tengo dos palabras por esto, y ningun esta feliz navidad!
Yes I did sleep well - even missed the 2 and 4 am potty breaks!!! Weird but nice.
He went to leave this morning and despite me trying to get him to stop the cat got out. I just let her go. She is funny cause when she gets to escape she takes off bouncing as she runs with her tail straight up! After he left I was going to try and get her but she kept running so I came inside. About an hour later she was ready to surrender!
The poor bus driver. Art kept stopping him from taking off because he 'forgot' his glasses. It took two times to get him to settle down telling him he didn't have any. The VA is sending out another pair but it will take 2-4 weeks (use to be 2-3 months). Probably by then he will forget he wears glasses but then old habits die hard.
Just came back from a doctor's appointment after some kind of weird cough and virus thing that hasn't let up for three weeks. Was surprised to find that I have left lower lobe pneumonia! Holy antibiotics, Batman!
This winter has been very bad for illnesses. Seems no matter where you live, so many people are sick & lasts for a while. Elizabeth, good thing you went to the doctor.
Sorry you have to battle this. I know you will take take good care of yourself and trust that you'll soon recover. People here are experiencing the same. Hugs to you and Bandit, and you are in my prayers.
He is just cruising along. Last night he did his normal - went in and remade the bed. I went in and he asked me if this is where he is to sleep pointing down to his side of the bed. I said yes, then he asked me where I sleep. I told him on this side. He said 'ok' and went to bed. He seems to be more confused - I am wondering if it because of no glasses. Without them things are blurred which might be making it harder for him to connect to situations.
I have not told him yet about tonight. A little nervous. If the woman has never been in an RV this environment could be totally scary for her. I will tell her he can make a PB&J with chips and cookies for dinner. I know how hard it is to figure out a new microwave so that will be easier and he will be happy with it. I wish I had more than my broken down chair for her to sit in, but I don't.
Mark Twain once said that if the first thing you do each morning is to eat a live frog, you can go through the day with the satisfaction of knowing that that is probably the worst thing that is going to happen to you all day
I liked this quote, but upon reflection, decided that it didn't really apply to caregivers. There have been at least a couple of days where I think I would have voluntarily picked the frog over what actually did happen.