I need your advice. My DH has been in an ALF for about 3 months now and I try to see him about 5 days per week. My problem is that i dont know what to do with him when I'm there. He cannot understand what I'm talking about so I don't try to make much conversation. He doesnt want to look at picture albums or scrapbooks because he does not remember people in them and that makes him anxious/scared. We always attend their group activities (music, concerts, bus rides) but I'm at a loss for other ideas to connect or entertain or sooth him. All too often he starts insisting that we "get out of here". If I cannot distract him, his anxiety starts to build. I think that sometimes the stimulation of my being there brings on the agitation. If I cannot keep him calm, sometimes I just have to leave, which tears me up. I feel like he needs something from me but I don't know what to do.
Any suggestions from you wise people regarding what has worked for you would be greatly appreciated! Thanks so much.
I will soon be placing my husband and I am sort of wandering the same thing. I doubt that I will visit as much as you as I plan to return to work. I still have not decided how often to visit. I think one thing I will dois pick him up and take him to church even tho he cannot participate too much. I may stop in and just be with him while he watches wheel of fortune and jeopardy. He still loves these shows. I may take my knitting for something to do. I have not felt like it is necessary to do anything with him and all through this disease I did not spend a lot of time trying to entertain him. Quite honestly I had too much other stuff to do. But I know everyone is different. I am praying the adjustment goes okay
Fiona--I also visit about 5 days/week and pictures, etc., have been of no interest to my husband. As conversation faded into a thing of the past, I replaced it with personal care. He has lived in the ALF for 2 years now, and he often needs a touch up with the electric shaver, or his hair combed. Also, his dental hygiene isn't what it should be--I'm not sure if this is due to his lack of cooperation or due to the staff's inattention (the dentist I hire periodically says poor dental care is common to all facilities). Anyway, the dentist advised me to buy brush picks and to use them to clean his teeth. Besides those things, I take him snacks like cookies and a drink (he needs assistance with eating but always enjoys snacks).
I also used to bring in Steve's favorite music, take him to an alcove where there's a tape player, and we would sit and listen. I think his ability to enjoy that and the group activities are over due to the disease's progression. Could it be possible that the group activities are overstimulating your husband and causing the agitation, rather than your presence? Steve now prefers a quiet place and is more solitary.
I still do a running (one-sided) conversation with him, even though he speaks in gibberish now. He does seem to comprehend some of what I'm saying, may even laugh or "tell a joke" himself. I do a lot of hugging, kissing, hand holding, etc. To me, it's a replacement for the words and I know he understands that I still love him.
Sometimes I use my iPhone and check email, the web, etc. while we sit together.
Fiona, this is something I feel passionately about. I believe that even in the latest stages that our loved ones are still 'in there', just trapped. People seem willing to accept that even coma patients benefit from touch and sound, yet when Alzheimer's damages the brain to the point they can no longer communicate, people just assume they are lost. Perhaps they are trapped in their own little world, but they do still need to feel a gentle touch, to hear comforting words. These are basic fundamental needs.
I have said before the only way I was able to find peace was by stopping my attempts to drag Lynn back into my world and instead going to join him in his.
Think about the things that meant something to your husband. Things that were important to him, perhaps a hobby, a pet, a pleasant childhood memory he shared with you etc. etc. I believe that stimulation of the senses is vital to getting responses from our loved ones. I do a lot of my shopping for gadget on Autism sites, the sensory items have been a big hit with not just Lynn but every resident I have shared them with. Even those who seem completely lost.
Lynn is now able to engage in activities where he does 'building' with legos and pegs. It is simply amazing how intent and focused he becomes while 'working'. I wish I could post a video of him here to share. I personally believe the reason so many seem so lost in a facility is because they get no one on one stimulation. Yes group activities are wonderful, but I also feel they need more individual attention. I have placed some of Lynn's lego's in front of many residents, almost all will at least play with them, even if they can't build with them. It stimulates the senses and gives them something to stave off the boredom.
Our activity for the day depends on how Lynn is interacting that day, but every day I do find a way to interact with him and bring smiles to his face (and mine). Music therapy is amazing! Have you watched the video in this thread? http://thealzheimerspouse.com/vanillaforum/comments.php?DiscussionID=7408&page=1#Item_0 It helps to have them listen to music they can connect to. I am still in awe when Lynn will occasionally sing a few words to a song.
If you husband can't interact, he will still enjoy physical touch. We seem to realize how important touch is to even an infant, yet seem to forget how vital it is to all people, in all stages of life. Human touch has wide-ranging physical and emotional benefits. I too shave Lynn, partly because the staff doesn't do it well and partly because it is a way I can get close and interact with Lynn. I also trim his nails, this allows hand holding and assures his nails don't dig into his palm when his hand contracts. I also do range of motion and massage, he really enjoys it and has the added benefit of helping ward of atrophy. Kind loving words while gentle touching his cheek always assures I get a kiss :)
An average day for us always starts with a trip to the frig to get him some bottled water. The poor buggers do not get enough fluids and their throats are often dry. I find the act of drinking wakens him and makes it easier for him to talk. If there is a morning music show we attend that, if not we go for our daily walk. Weather permitting we spend about an hour outside taking in the sound and sights of nature. This is something Lynn has always enjoyed and still does. I often use this quiet time to call his sister in California. I carry a tote bag with some simple books in case he starts to appear bored. He also loves to watch the big trucks go by, so I will take him for a walk around the back of the building where he can see the road. He always comments about some car or truck, I don't know why it brings him joy, but it does.
Then we head in and wait for lunch. While we wait I take him into the sunroom and bring an activity that I feel will fit his mood for the day. Sometimes it is building items, sometimes his train set, books, musical instruments etc. and sometimes he is so talkative I just sit back and listen to his made up stories and encourage him with the appropriate responses. If he is particularly lethargic that day, I go straight for the music. With Lynn, there are very few days that me dancing and singing Ring Of Fire doesn't get a pleasant reaction from him!
He has become friends with another spouse who visits his wife daily. This guy is a saint! He gets very little response from his wife so he thoroughly enjoys bringing a smile to Lynn's face. When Lynn sees him he will often say, there's my buddy! This guy sings to Lynn almost every day! He gets down to Lynn's eye level, engages his attention then with great animation sings Lynn a song or two. To watch them interact is something to witness. That he would care so much about Lynn, well.... it's moving.
I always feed him lunch, it is a great way to get some interaction and reactions. After lunch we either go to a music show, out for another walk, or we watch one tv shows or DVD's that still engage him. Then we use the lift to put him on the toilet and I sit in there with him so he isn't afraid. (not very exciting I know, but it does seem to bring him less anxiety and comfort) Then we tuck him into bed for his late afternoon nap. I either sit or lay on the bed with him, gently rubbing his arms and face. If I have the time I sit with him until he falls asleep. I get as much from our visits as Lynn does.
He could still be transitioning Fiona, that could be why he makes the comments about getting out of here. In the beginning I too had to use a lot of distraction. If he was getting too agitated I too would have to leave. In time that got better and I found better ways to calm and distract him. Sometimes the best we can do is reassure them that they are loved. Soothing words and gentle touch are great distractions that also bring comfort. Be gentle with yourself too Fiona, you too are transitioning ((hugs))
Fiona, my hb is not in a facility yet but when he was in rehab I brought in a map of the us (wooden child's puzzle) and he was still able to tell me the different states and some of the capitals. He likes the colors the states are on the map. He also still likes to color in coloring books, so we did that. Music is always good for him. He also likes to look at pictures of animals, especially the different breeds of dogs, so I brought those in as well. Snacks work well too.
I was surprised he no longer is interested in photos of our travels, friends and family and in fact cannot recognize anyone except himself in pictures. I thought he would never lose those memories, but he has. Comforting to know he's not the only one.
Oh Fiona, all of our LO's are so different. Nikki is so blessed that her efforts with Lynn pay off so well for both of them. My DH seems to be very unresponsive to any visual stimulation. He has had agnosia (loss of ability to recognize objects, persons, sounds) for a long time now (even before he was placed in the Veterans Home & he has been there since last October). I happened to mention to one of his aids that I was wondering if there was anything I could do or get for him that would interest him & she told me that the staff was actually talking about that for some of the more advanced residents who don't have much stimulation. I went to Walmart & actually looked in the baby department for some toys that might get his attention, but I just couldn't bring myself to buy any. My daughter works at a daycare & she has taken a lot of her kids baby toys there & she told me not to buy any & she would give me some to try. He has declined a lot in the past few months & he now needs to be fed, so I try to go in & feed him either lunch or dinner least 5 days a week. Whenever I go there he is usually sitting in the big TV room at a table (he is in a wheel chair). The aids don't let them lay in bed all day. I go & sit by him & hold his hand & talk to him. I also hug & kiss him & rub his back & arms. I talk to the aids & I have gotten to know them on a personal level. Sometimes it's just so difficult seeing him the way he is now, but when he does recognize me & gives me a smile I'm happy that I am there with him. I don't know if any of this helped you, I wish you good luck.
Yes Elaine we are lucky and I count our blessings daily. Before Marinol LYnn too seemed so lost and non responsive.
I understand how difficult it can be to buy things to engage them from the toddler/baby section. The first few attempts ended with me in tears. When he treated a stuffed dog as if it were real, at first it broke my heart.
Now I am able to look at it differently, if it brings him some comfort and makes him happy that is all I care about. Now when he barks with his dog it brings a tender smile to my face instead of making me cry. Its all about helping them engage at their level.
A beach ball, a plush of their favorite animal, something that lights up or makes sound, something they can manipulate with their hands (like a tangle) etc..and of course music.
The first time I put maracas in his hands I got no reaction at all. I kept trying and got a second set for me. He is a mimicker, now with an upbeat tune and me using them too he really rocks them :)
There is a lot to be said for just sitting there with them, to let them feel your presence with words of love and gentle touch. You are doing great Elaine! He knows you are there for him ((hugs))
Thanks so much for your advice. Yes, I realize he is still transitioning but I feel so helpless in making him more comfortable, connected and peaceful. I liken his "we've got to get out of here" to other spouses' asking to "go home". He said the same thing at home, so I don't take it too literally but I'm still at a loss to distract him successfully.
I'll bring in some Lincoln logs, as that was one of his favorite childhood toys. I'm going to find some books on birds and dogs that I hope he will like. He also loves maps so I'm going to see what I can find. Like others, he always likes certain treats and sometimes I can convince him to do some personal care too.
I brought in his handball gloves, balls & a basketball hoop that you hang over the closet door. He seemed to like the basketball game the first day but couldn't make too many baskets. Now he won't do it, says "it's not fun". He wears the handball gloves all the time but won't touch the balls. He loves music, but does not want me to put music on his CD player - or sing. It seems as if it's all too much stimulation for him. He also loved his boat (and drinking beer). He won't mention the boat and gets frustrated when he looks at boating pictures. I understand that, as he's so happy in the pictures and he is currently so sad and lost and does not recognize anyone.
He does like me to lay on his bed with him in the afternoon and, as he goes through his chanting & facial grimacing, I just rub his chest & tell him I love him. That seems to calm him down.
I guess if this is the stage he's currently in, at least I can feel comfortable that I'm doing all I can. Thanks again. Maybe I can get him to smile today ... and maybe I'll be able to sleep tonight!
Yes Fiona, it is so heart breaking at first. I remember trying so hard to bring him comfort and soothe him. There were times nothing worked and times I just had to leave before I broke down in front of everyone.
We have been doing this for 4 1/2 years now. When he was placed he was too advanced for an ALF and needed to be placed in a nursing home.
The first 6 months were more about soothing his worries than trying to entertain him. I know we don't like to over medicate our spouses, but something for anxiety and depression could help him get through this period with more comfort and peace. It helped Lynn, then we he fully adjusted he was taken off them all.
You are doing wonderful Fiona!! You are thinking of things that could bring him pleasure and you keep on trying. What more could one ask for? You have such a gentle heart...for now he might just want those tender moments with you instead of activities. Keep doing what you are doing, its perfect! I hope he smiles for you today <3
Oh Fiona, you're doing wonderfully...just being with him I am sure makes him happy and calm. I am sure you will find some things he enjoys. Be ware, what he enjoys today he may not enjoy tomorrow, but it's worth a try. When my hb rejects something, I save it and reintroduce it again at a later time.
Nikki, you are always such a wealth of information. I do shop in the toy dept, the early learning, educational toys. I particularly like the Melissa & Doug wooden toys (amazon). But you really helped me with mentioning the products for people with Autism. I checked out many sites and found interesting that they also recommended using products associated with the Montessori learning method. Thanks for the tip!
LFL, you are so right about what they enjoy is always changing. My DH was always building and repairing things before AD so soon after he went into the NH I went to the hardware store and got him pvc in the shape of T that he could screw plastic nuts or end caps on. These were adult items that he could relate with and carry in his tool belt. (I called them his 'fidget widgets') That interested him for about a month. Now, 1 and 1/2 years later, about the only thing he gets excited about is hitting a balloon back and forth between us. Balls are too heavy and fall too fast and he needs the extra time to focus on the balloon moving toward him. The best thing that he has always liked, even before AD, is having his back rubbed and that we can continue on doing until the end. What we are all trying to do in our own small way is keep connected with our loved one.
Yes LFL, turns out I was following the Montessori learning method without even knowing what is was lol.
Exactly OKrose, to try to stay connected is all we can hope for at this stage and how we will be able to connect will be as different and unique as our loved ones are. They do the balloon at the nursing home too and for those who have poor hand function they have these large lightweight paddles (a cross between a fly swatter and a badminton racket looking) to make it easier for them to hit the balloons.
As always, you people are a wonderful source of both advice and comfort. We both had a good day today. He was relaxed and calm so I was able to talk him into stripping down so I could wash him up and have him get into new clothes and then we went to a music program. When that was over, I got him past the "we've got to get out of here" phase and we went to his room and I put lotion on his arms, hands and feet and massaged them. We then 'snuggled' as Nikki puts it and listened to Ed Ames for a while. He sang with me, held me and kissed me. I left there very comforted because he was content - and didn't break down until I got home. Typically, I cry all the way home, my heart aches so.
This weekend his daughter is bringing in her boys' Legos as well as their Lincoln Logs, my DH's favorite childhood toy. I'll see if the activities person has recommendations as to how to introduce them to my DH. I also brought a few of his school-days books that I can read to him at times. I realize that none of these may work for long or at all, but at least I have some options available. I really love having a plan!
Nikki, they did recently put him on Neurontin for his anxiety and he has become much more cooperative with the staff and me regarding ADL's and is generally much more calm. I do understand the importance of meds. Just the other day the staff told me that he had some sort of altercation with another resident - the second incident in one week between these same two guys. I have a meeting set up with the supervisor to discuss how to nip this in the bud. With what I've learned on this website, I want to do everything I can to keep this from escalating to a required Geri-psych evaluation.
Yup; as has been stated here many times, our caregiving responsibilities don't lessen when they are in placement, they just become different. It's all good though.
I have been peeking in hoping to hear word about how your day went. I am so happy you had such a beautiful day with your sweetie ♥ These tender moments are what will eventually help heal your breaking heart, or at least soften the blows.
My sister suggested Lincoln logs too, I haven't tried them yet as I thought they might be too difficult for him. Please do let me know how they go over. The mega blocks I got him are bigger than the standard legos so it makes it easier for him to manipulate. Honestly Fiona I had to purchase 2 of the large storage totes to store all of his gadgets in because all of his drawers were full.(4 1/2 years is a lot of time of trying different things :) Some are instant hits, others not so much. I store them to try again later. If he gets bored with something, in the bucket it goes for awhile.
You are doing everything exactly right, reaching into his childhood is a great way to try to reach him. Around the holidays they have lots of the older type stocking and basket stuffers. One of Lynn's favorites is this silly hand held toy that you push a button and the thing spins a Christmas tree open to reveal a snowman inside. I didn't know why he liked it so much until his sister told me they always got those toys in their stockings. You just never know......
It is so true that if they have a good day, we do too. I am glad today was a good day for you both ((hugs))
Glad to hear you called for a meeting Fiona. I would think they could come up with a way to keep the two separate until they settle in. I see it happen all the time where Lynn is. Not just with men either, the woman have duked it out too! Poor buggers...... I am glad the medicine has brought him some comfort ((more hugs))
Fiona, I too am glad you both had a calm, wonderful day! while searching the internet yesterday for more "toys" for DH, I found the pvc pipe tree they had in occupational therapy while he was in the NH rehab. I decided to buy it (it's a bit pricey but found it at $60.00) because he absolutely loved playing with it at the NH. It not only keeps him occupied but allows him to make different designs. Let me know if you'd like the website.
Yes, you must nip this in the bud. During DH's geri-psych stay there was another patient who he absolutely did not like. They would make menacing faces at each other behind their backs. And when no one was looking, they'd take a swipe (open hand slap) at each other. The behavior did delay his discharge because they said he could be dangerous to me. Better to get this resolved and have a full understanding of the facilities plan in keeping them separate and what actions they will take should it escalate.
Nikki and LFL, I got more details about the altercations my DH had with this other man. My DH likes to shake hands with every man he sees. Part of this is that he is trying to be friendly ... but sometimes he wants to show how strong of a grip he has by squeezing the hand he is shaking. I was told that he was being friendly with a new resident and shaking his hand but didn't let go when the other guy wanted to. Whether he squeezed his hand or not, he was at least holding onto this other guy too long. I feel just a bit better that he wasn't intentionally hostile or confrontational - but also know that we have to keep a really close eye on him or it could escalate to that.
LFL, I'd love the website for the PVC pipe tree. Thanks.
Today I went over there with the intention of taking him to the music program but he was laying down so I crawled in beside him. We slept for an hour holding hands, then he went to dinner and I came home. I felt all filled up with love when I left him. Even 8 hours later, I don't feel alone, because I still feel his warmth around me.
Oh Fiona68, my DH did the exact same thing when he shook hands. I hated it when he would go to shake hands with someone, especially a stranger. People who knew him knew that he would do that, but I still would tell him not to squeeze so hard. With my DH it seemed also to be a show of how strong he was. But that, like most other things stopped as he progressed.
All filled up with love.... what a wonderful way to express it Fiona♥ Yes, that is exactly how it is for me too, and the good feelings last me throughout the entire day :) I am so glad you experienced this tender moment, such a gift and one I know you treasure. I am so happy for you ((Fiona))
I was relieved to hear the altercation wasn't too serious. Lynn never got aggressive with anyone there, but he too had the hand shaking situation with some of the male residents. I don't see this as aggression, just males making a firm handshake. There was one guy who always tried to have the firmer shake and would not let go of Lynn's hands. I don't think he was being mean though. Lynn's skin is rather thin and he is on Coumadin, so there was a worry there. I just asked that they keep the new guy separated from Lynn until he transitioned better. Perhaps they can do that if it is one particular person. ((more hugs))
Fiona, what a wonderful day! The website is www.ssww.com and search on pvc pipe tree. They have a lot of interesting stuff. Oh, before you buy, search for online coupons. I was able to use one with $5 off and free shipping on orders over $59.99. All the other websites were charging $100-$200 for the pipe tree. Same tree.
Nikki I wish I had seen the lego idea when I was going to town, I cannot wait to buy him some. Puzzles have been out of the question for a very long time. But he is wheelchair bound how awful it must be to just sit sit sit. I give him a ti leaf to rip mess with, they like to tear it in sections to swat bugs. And sometimes just a couple of pieces of string to have in his hands.
Another thing he lost is the ability to color, now he will just take the crayon and scribble back and forth on one line.
Fiona my eyes are teary and my heart is warm as I read your post. Those good days are kind of rare, and it is SO NICE to come home after one. We had one the other day just sitting by the beach.
Coco, I envy your ability to get him to the ocean. My DH loves the water & loved boating but he doesn't show much interest any more. In fact, anything away from the ALF seems to agitate him.
LFL, the PVC tree looks great. They are out of stock for a few weeks, but I'll be purchasing one as soon as possible. And thanks for the coupon tip.
Hey Fiona, I should mention, it is really a feat taking him in the car, and a time will likely be coming when I cannot do this anymore. Between getting the wheelchair real close to the car seat, and two of us almost having to lift him in, it is almost impossible. But I am not ready to give this pleasure for him, and me, up yet. I dread the day we cannot go for rides. (it could be soon....)
So when we are at the beach he sits in the car of course, I cannot get him out in the wheelchair by myself. But that is so common here in Hawaii, year round we can just sit in the car, eat, converse, read, and even sleep.
I want to comment also on something Wolf said in another thread, as a side note. That good stories are just as important as bad ones. This is a new mantra for me.
Coco, i remember transporting my mother from the NH in her wheelchair to the car when going on outings. Although she didn't have dementia, she was 93, very frail, anxious - and a little cranky :)
It was a huge undertaking for me, so I can well imagine what it costs you physically and emotionally to continue to provide this gift to your Dado. I truly admire you.
On shaking hands--it does seem to be something that the males do and my husband has retained it for a long time. He's stage 7 now and will still do it (as well as kiss women, in a friendly way--and only me and the aides who take care of him). His doctor uses a handshake to evaluate the patient's strength--I thought that was an interesting way to do it.
must be something about the disease and handshakes then. my poor DH bedbound almost all day now has a handgrip that can rival a 30yr old. its so strong it takes 2 people to pull his hand off. if he grabs my wrist I cant get lose and I am a lot stronger than him, or so I thought. its quite amazing they can manifest the strengths so late in the disease. I can see where being touchy feely in a facility could lead to issues among the dementia folks. some enjoy contact some don't. good idea to plan ahead and avoid further altercations.
It must be a man thing...my husband also shakes your hand with a vice grip. Won't be the first to let go. I have arthritis in my hands and when he decides to "hold" my hand I just grimace, the pain is unbearable.
There are some very good suggestions here and I want to save them for future use. Very interesting about the hand shakes. That's been a real problem with DH. Some people at church have quit shaking hands with him. He won't let go and has a vice grip on them. I didn't realize it had anything to do with AD but it does seem to be a common thing. My DH is in daycare one day a week at an assisted living facility and wants to shake hands with every man there. Sure hope it doesn't turn into a real problem there.
Yes, spend as much time snuggling as you can. You will remember that feeling and the warmth wrapped around you even when they are gone. I have a child's bowling set and a few other easy activities I could send to anyone who would like the. My email is shannon@cestogifts.com. Just send me your address and I'll send them to you. Music is also always great. Terry could still remember words to songs even though he really couldn't form a sentence...
Shannon* such a lovely offer! If nobody takes you up on it perhaps you could donate the items to a local facility? Though they tend to have scheduled group activities they rarely have stimulation items for them in their rooms or while waiting to be served meals or after meals. Their boredom is painful for me to see...accck! I am sure they could put the gifts to good use :)
Sitting outside on the better weather days listening to birds, etc. seems to be the best thing I've found for DH, and with my parents. Obviously doesn't work in the winter though!
Dog, we have mostly good times. He is retreating to his room more often lately and I'm assuming that the world is just too much for him at times. We went out on the facility's bus ride this afternoon, which he enjoyed. But when we got back, he wanted to go home and it was hard to leave him there. I keep reminding myself that he does not need anxiety meds when he is there, unlike when he was at home - a clear indication to me that this the best solution for him. I'm bringing in Legos tomorrow. It will be interesting to see if he has any interest in them. He cannot participate in conversation so when we just sit, he gets anxious. I'm hoping Legos will entertain him.