Calling all suggestions! Today's Blog deals with the issue - My husband isn't cognitively compromised enough for Daycare, but isn't mentally or physically able to work. WHAT IS HE TO DO ALL DAY? I invite you to read the blog - I am open to all opinions and suggestions.
I read the blog Joang and I agree what ever makes them happy at the time. If it's a doll or a stuffed animal, so be it. I don't know how it would make them feel bad during their more lucid moments. They won't remember where it even come from of that it was given to them. I'm speaking only from my experience with Bill. The only thing that will bring a smile to his face is a big box of candy. The bigger the better.
I ordered a book titled "Keeping Busy" a handbook of activities for persons with dementia. By the time I got it, it was too late to be of much use for Bill. If you want to email me with your address, I'd be glad to send it to you. You're good at picking out things and sending them out to others, I'm not. I think I got the book from the alzheimer's store.
If the book doesn't give you some help, maybe you will find things to help others. The books yours if you want it.
Joan, I am stumped also of what he can do to keep busy. Daycare is much out of the question right now; I know it would depress him. My LO sleeps much too much lately in between our errands and activities together. Taking walks is about our favorite when weather permits because of blood thinners even Louisiana weather is sometimes too cold for him.. I want to get us bikes for Christmas but my daughter is afraid he falls and gets hurt. He is slowing down on driving alot, which to me is a blessing although his motor skills are good there, I just don't like him on roads alone and what if ?. But for him to do alone, I don't know. He can't handled video games or computer games anymore although he is constantly trying, definitely won't accept help from me, gets frustrated and goes back to bed. Oh, housework, like a kid, he says later or messes up more than helps Thanks for sharing and being here for us, PAT
I'm in a very similar spot on the slope as Joan. Jeff asks periodically "I wonder if retirement is like this for everyone? I wonder how long it takes to get used to it?" He is right in that many people feel at loose ends when they retire. What he doesn't grasp is that most people have projects they want to do, and are capable of organizing and doing. He is not, and doesn't seem to quite realize that his boredom stems from not doing anything, which stems from not being able to direct himself to do anything. So, yeah...there's a lot of tv watching. He particularly likes the financial news on MSNBC, and he also spends time reading investment and other news in the papers. Though I am not one for stock picking versus mutual funds, we maintain a certain portion of investments in individual stocks so that Jeff will have something that he feels like he's doing by keeping track of them (although he can only log on through me.)
The problem with the "keeping busy" handbook and things like it (if I'm not mistaken, and I may be--correct me if so,) is that they're aimed at people who are more "out of it" than my husband is, and I gather that is the problem for Joan as well.
On Thursday mornings a group of retirees at our church have "rehabbers" group. They gather and work on various church maintenance projects. Today was typical in that Jeff came home and reported that they "really weren't doing anything." I know this is not exactly true because I see them doing stuff every Thursday. The problem is, Jeff has lost the capacity to survey his surroundings or the group he's with and figure out what's going on and how to be a useful part of it. So someone will assign him something small...he (or the person he's helping) will do it...and he can't figure out anything else to do. They are a very supportive group, and encourage him to come back when he's been missing, but it doesn't help much if he doesn't understand how to participate once he gets there.
I guess we need an intermediate Keeping Busy Handbook. In the meantime, mostly I just try to take him with me when I go somewhere, eat lunch out, stuff like that.
The problem w/keeping busy is that AD patients are unable to initiate anything on their own. As caregivers, we have to be there all the time guiding and involved and that is impossible for most of us as time goes on. Just how many times can you look at old photographs? I hired a man from the senior center to take him out a couple days a week. They did a lot of the 'male-bonding' stuff. My husband showed him all the tools and things in the garage, they went for walks, to the park, the beach, maybe a museum or two--can't remember exactly. His friends were drifting away, but they tried. When it came to day-care, I told him they had asked if he would come there to 'work' and help out. So he went happiiy to 'work.' Times changed and he began watching more and more TV. I know there are those who say 'no' to TV, but I found it a blessing. He liked Mr. Rogers, male-bonding again, and interesting things and places were shown. I taped the shows and played them over and over for him--they were always new in his eyes. He enjoyed several of the children-educational programs and whatever. I taped whatever held his attention. I avoided anything w/violence, including certain animal shows w/lions killing zebras and such. But depending on their taste, there's a lot available.
I found that a lot of the activities involve your participation, and as much as I wanted to be w/him, to show patience and caring, I could not spend all that time keeping him busy--it was driving me nutty. If you can find a group, like at church, and they are willing and understanding, that's good, too, but eventually it can't last for a variety of reasons. So, for me, Mr. Rogers it was.
A lightbulb just went off in relation to something Bettyhere said - "AD patients are unable to initiate anything on their own." I hadn't thought about that at all, but it explains a lot. I will definitely keep that in mind now.
What comes to mind is,,do our loved ones look for stimulating activities or do we think they need them? It sounds to me, Joan, that Sid is doing better than most of the loved ones here. He is involved in household tasks which is great, still reads the paper and participates in a church group. He still drives and does the shopping so that gets him out into the community and into some interaction with people. You also mentioned that you get together with other couples from your support group, all activities that would be stimulating to your husband. It is true that AD patients lack the ability to initiate things and we have to be there to encourage and support. However, I feel we need to be careful about pressuring them into activities that might turn out to negatively impact their already fragile egos. This is how I see it and I'm sure others will disagree.
You make a darn good point. I hadn't thought about it that way. I guess I'm comparing who he used to be and what he used to do to how he is now, and as we all know, that just can't be done. Maybe I'm expecting too much. Sometimes it's all so confusing.
It is a good point, but I can say pretty definitely that Jeff is feeling the lack of things to occupy himself with, and it's not being a good thing for his feeling of self-worth. It feels like a real conundrum to me. I'll let the Board know if I think of a way to have something easily on hand for him to do that would also interest him and feel worthwhile to him.
Our experience with a bicycle is that one day my husband just fell over while riding. He said he knew what he was supposed to be doing, but he couldn't make his body do it. Fortunately he was right in front of the house when it happened, because he had kind of a nasty spill. Maybe a three-wheel bike would be different for him--but then I worry about him looking out for traffic. Since he hasn't driven for several years, I would be afraid that he just wouldn't think about the traffic like he should.
My husband will be 60 next year, and finally eligible for some "senior" benefits. I am thinking about once in a while having him ride the senior bus to the senior center for lunch. (The first time or two I may follow the bus, in case he has any problems.) I really think it would be good for him to see people other than me once in a while. And it would take up several hours in the middle of the day, so the day wouldn't seem as long.
It was by accident that I found something to keep Bill busy for several hours. Our daughter bought peanuts in the shell and we were eating them. Bill started opening them but he didn't eat any. We just let him open peanuts until he got tired a few hours later. He only did that twice. Guess it's a good thing because I was getting tired of eating peanuts.
She went out and bought a large bag, but by that time he had lost interest so they are still sitting here.
I, too, am constantly on the lookout for things to keep Gord busy. He never read books, never read the newspaper and really didn't care about world affairs. He also doesn't care about TV. He is still driving locally but only when I am with him. I try to space out shopping so that every day has a little something to do but it is really difficult. He has a friend who comes every other week to take him out to lunch. I don't think he is ready for daycare either. In the summer, he would go and sit outside and read the same book over and over. People would come by and chat. The winter is looking like a long, dark road.
I know Den has his aquarium that he loves. But he feeds the fish so much, the tank stays cloudy. He also has Yoshi; a 2 year old spoiled rotten shit-zu dog. Now Yoshi is really annoying him. Den says Yoshi has to go because he has so much more energy then him. But I know Den would not want to go on without him. Den also enjoyed a little gardening but winter has put a damper on that.
My husband has early MCI - not AD, he is still able to work a little and is fairly high functioning. But many of our past activities are not longer viable - scrabble, traveling, going out with our friends - I am embarrssed with the cussing that is new. He does read a lot - doesn't like TV anymore. I had been working on a puzzle to help me with some coping. I wasn't sure to offer it to him as I really didn't know if he could do it. As you all know, I am sure, it is surprising how well they can do somethings and then can't do certain other things at all - so I never know. But he has entered into it with me. We sit and puzzle every night - not much talk, which is good, because it is all superficial anyhow and he seldom remembers any of it. So we can do this activity side by side, not having to verblize. Some of the pieces he gets wrong and I go later and re do them. But for us at this time, it is working - praise God. I did notice in the Alzheimers catalogue that they had puzzles with large fewer pieces - so it must work for some folks.
I had another thought - not sure how it would work but maybe some success with higher functioning folks. I have an IPOD - it have news stories, walking programs, all sorts of music, books, etc. I thought maybe the one for walking would be an incentive to get out and walk if that is still an option for some. The ones for walking have music, but also guidance all through it - when to warm up, to speed up and to stop - and encouragement all through it here and there over the music. Also, at this time, my LO loves to run menial errands. When he runs out of things to do, I send him to the garden shop that is run by a man his age who has been their forever and knows everything about plants. They can talk for hours - the suggestions are sometimes remembered, but if not, it has given him something enjoyable to do. I know that this won't be able to happen forever if he declines, but for now.........
My 56 yr old DH was spending most of his day walking. He would walk 4 miles downtown to the Raddison Hotel and play the piano in the lobby for 1/2 hour or so and then walk home. Sometimes I would pick him up to shorten the walk. He has been doing this for almost two years. He would not be deterred by the weather, hot or cold (we live in Michigan) He did get lost on a few occasions but I was able to track him by the GPS on his phone. About 10 days ago he abruptly stopped taking these walks. Apparently he can't tolerate the cold anymore. Now he sits and listens to sirius radio all day, now and then stopping to play piano. He doesn't read or watch TV. I have no idea how to fill this time that he was spending walking. He's not ready for daycare - we tried it. He seems to be content or he's a good faker. Music is his lifeline. I'm thankful he has that.
I never thought about DH not being able to initiate socializing. I have been after him to go and see some of the gentlemen in our community that he is friendly with and he won't do it. Now I just realized that it maybe because he can't. The only time he goes out is with me or if he has errands in town he will go. Very interesting.
As for activities around home, we live out on a lake and he like to cut firewood and haul it around. Even though I worry he might get hurt I feel he might as well do something that he loves. He is a putterer around home and as long as he keeps busy I try to stay out of his way though I do have to go behind him and fix some of the things he does.
I'm a social worker at a Day Care in Westchester County, NY. It's true that "medical models" are not appropriate for high-functioning people who are still in the early stages of AD or other forms of dementia. But the place I work is a social model, and we have a wide variety of people attending - people as young as 60 with early onset AD, or 95 year old people who are completely cognizant but attend our program because they are home alone all day and too isolated. Try looking for a social model day care - even just two days a week helps keep them stimulated, social, and provides the caregivers a much-needed break.
I would like to weigh in on this subject. A year after Steve was diagnosed, while still MCI/early stage AD, I was at the end of my rope trying to entertain him. One day out of desperation I went to my own AD book library, and found the answer. Both the 36 Hour Day and Learning to Speak Alzheimer's suggested adult day care--telling the person that they were a volunteer. I'm here to tell you it has worked beautifully, and I believe that Steve's attendance for 2 1/2 years has provided the brain stimulation that has helped keep the progression of the disease at a slow pace. Now, it happens that his personality has always been such that he enjoys helping others--he has done community service all his adult life--and this ties into the success. The staff is very supportive and actually allows him to help with the more cognitively impaired clients. And here's the strange part--it does not upset him to be with people in later stages of the disease. He has never once made a reference to the fact that they are where he'll be someday. I have also told him he is being paid to do this "volunteering"--that serves as a motivation for him to attend 5 days a week. So, please don't let your preconceived ideas about adult day programs cause you to rule them out for your loved one. Choosing a center with a good staff is essential; some "therapeutic fibbing" is required to help your loved one buy into the idea; but it is so worth it!
I second what Marilyn says: Don't necessarily rely on your OR HIS preconceived ideas, or the "he has never liked to..." I've found that my husband, who NEVER chose to watch TV (and barely tolerated me having on the news) now likes to watch a lot of videos from Netflix. He used to be highly annoyed when I had friends over, now he socializes with them and is happy to do so.
But yes, I agree, it's terribly hard to find things for them to do when they're not yet to the sleep/stroke a fuzzy stage.
I would say my DH is at a "fuzzy" stage. He can't do anything except personal hygene, and I am VERY thankful for that. I still have to help him with his shirt and jacket but he can do the rest. He sleeps, or at least stays quietly in bed all night. Is even tempered, calm, easy to get along with and accepting.
Other than that he dozes in his recliner in front of the TV all day. Does not care what is on. Can't follow a show. He can usually go up and down the channels but cannot answer the phone or push the off button. He knows everybody, including people he hasn't seen for years. Remembers where they live, where they worked, etc.
He has zero interest in doing anything else, including picking up his clothes or doing even the most minute household chore. Does not want to socialize or want me to socialize.
I am very thankful for where we are in relation to many others of you.
Does anyone out there have problems getting your DH to day care in the mornings? My DH has been going for 2 weeks now. He is so similar to Imohr's husband in habits although I have to direct him to the shower, brush teeth and shave. He wouldn't do that on his own. He has the added problem of not being able to see well because of the location of the brain damage. DH went to daycare willingly until last Thursday when he balked. I made the mistake of telling him he was going to the Sr. Center. I don't want to lie to him but on Friday I just said I was going to work and he assumed he was going with me - I never told him differently. Sometimes he goes to work with me is he has an early dr appt. The social Worker leading my support group suggested I say that the dr wants him to go to rehab which really isn't a lie. Does anyone out there have any other suggestions. He was found wandering at 4:00 in the morning about a month ago and that is when I decided he had to go to daycare while I worked. He is 71 and I am 63 and I have to work. The daycare is subsidized so I pay on a sliding scale. If he doesn't go then I won't be able to go to work as I realize I can't leave him alone all day. Help!!
Regarding bikes: Get him a three wheeler...they are really fun..and usually have a big basket on the back...if you stop at the grocery store for a few items. Most bike stores carry one three wheeler...and all can order them. They are fun in parades as well!!!
Pompanosusan--Based on my experience (will be 3 yrs this summer) a sales pitch is usually necessary to get them to go to daycare. Some days are easier than others--but the motivation I use is that he is being paid to go there. It's a "job" that provides "income" that we need. Just like most of us, my husband prefers to lie in bed in the a.m. and goof off--but I call on his history as a breadwinner and appeal to his male ego that he is still "taking care of me" financially. Especially if he likes to go to work with you--well, you have your job and he has his to go to. The daycare staff can even play along with it--they tell mine that he is a volunteer.
MarilyninMD - Thank you. Actually I tried the volunteer thing and it didn't work. This morning he went without even asking. I was thrilled. It went easily. I am finding that as the week goes on he balks toward the end of the week. I'll work on it. I really don't want to lie to him but may have to as days go by. We are only in 3rd week. Thanks so much for your help.
It's not called lying in our line of work--it's "therapeutic fibbing" (white lie for their own good)! I've also heard it called "rearranging reality". I do it constantly, whatever will keep him happy. It's a mindset--you have to get used to it--once you do, it becomes second nature. As long as it doesn't compromise his safety, I tell my husband he is right about everything. It keeps the peace around here!
If he's only in the 3rd week, I don't think he's into the rhythm of it yet. People with dementia can learn a routine--over time--and eventually he should be able to accept that this is his new lifestyle. But he's really still in the adjustment stage, I think, still getting used to the whole routine.
Marilyn is right. I call it "fooling around with the facts" but you will learn that at times it is all you can do! Think of it like when you told your kids there was a Santa Claus. It may sound harsh but as time progresses, it is all you can do. Hang in there.
My DH likes to watch sports ALL DAY LONG! It drives me nuts. However, other diversions that have worked in the past have been doing crossword puzzles (EASY ones, we do together), being my sous chef in meal preparation, he likes to play basketball so I am getting a portable basketball net. He won't go to day care but is open to taking some classes (such as exercise) at the local YMCA. Loves to listen to music, so we have started having music parties where we play music for 1-2 hours and dance. I find the exercise and the music greatly improve his mood and I don't have to convince him to do this activity. I also have some "Brain Teaser" cards with different themes-sports, presidents, etc. He will play with me and becomes competitive about winning (which is a good thing). Occassionally he will participate in using flash cards to keep his memory/verbal skills, but I've only had moderate success with using those. My last suggestion is he will play cards, so we play a few hands of pocker after meals. Unfortunatly, besides watching sports and playing basketball, I am involved with all the other activities, so I don't get much downtime. Hope some of these suggestions help.
LFL, ............ you are truly making lemonade out of your lemon life future. The first sentence would apply to most men at any age if they had the opportunity. Everything else you do is so precious. Enjoy every single minute of what you are doing together.
I wish my DH could do even ONE of the things you mentioned. Enjoy enjoy enjoy! I just reread your note. He must be in a very very early stage of AD. It's been 6 years plus since we've been able to do one of the things you mentioned...plus having the time to be personally involved with other activities. Wow! Count your blessings, sweet sister.
Grannywhiskers and Sunshyne - I told my children when they were young (now 46, 45, 43, and 37) that as long as they believed in Santa Claus (and later added - also that they were NOT married) that Santa would bring them a gift on Christmas morning. Santa still leaves a present from two ever-faithful single women!!!!!! (When my son got a divorce, he reminded me he was single again! Happily, he has remarried to a wonderful woman.) Don't you two dare spread fibs about Santa and the Easter Bunny (who also still comes)! Now, the tooth fairy hasn't needed to come to our house in many years!!!!
We must stay young at heart!!!!! <grin>
Nancy, my husband is in the beginning of Stage 7 and not able to do those things any more either. We kept up the card playing past the point of ridiculous! (He would turn the backs of the cards so that they each faced the same way - even when dealing!) We would have to gently correct him when he played a spade instead of a club, etc. Until HE gave up cards, we continued to play. That was over a year ago. But then, my husband is on the speed train....he was just diagnosed two years ago and was stage 4!
I'm hoping that my husband still wants to pull weeds. I'm going to try letting him in the yard next week and see if he still can. (tell the difference between grass and weeds, that is!)
Some really good ideas on this thread about ways to keep LO occupied. A friend loaned us some children's jigsaw puzzles and we've been doing them recently. I usually have to help.
Well, I thought we wouldn't be ready for day care for another year or so, but now that a rainy winter seems to have set in I'm concerned about DH's boredom. Today he wanted to go to bed at 4:30. That's pure boredom. I have an appointment for next week to go and look at a place where they could take him right away for two days a week. The lady I talked to was very friendly and suggested that I call it "the club." Oh dear. I'm sure he won't want to go but she says everyone likes it eventually. They will come and pick him up in a little van every morning and bring him home again. Oh dear.
Jeanette, give it a try. My wife was reluctant at first, but now goes to day care willingly and says she has a good time. They definitely give her more stimulation than I could (she's sleeping in her chair next to me now)
I think, sometimes it's more for OUR benefit, than theirs. I'm not even sure about making "life more interesting for them", unless they are in the earlier stages. And, everyone is different too. My DH is perfectly happy playing games on the laptop; or vacumning the floor, or cutting up veggies for a meal. I don't know - I'm just babbling this morning.
You have to find things that make them happy. Vickie's husband is happy playing games; mine is happy watching movies; others are happy just being in the room with you sitting close by while you do something. I don't think it makes any difference in the progression of the disease WHAT they actually do. The more pleasant we are to them, them more at ease they are.
My husband went through five model ships kits while he could; then the drew on an artist pad; then he pulled weeds - I had a weedless garden summer of 2008!
Just don't try to make them do something they don't want to - it will make you both miserable.