I try to imagine myself in her place and I can't. I am her entire world. She knows a few others but when I am away for awhile, she is very uncomfortable. I do my best to make small talk and she responds, but she can't have a conversation because she can't remember what to talk about. I feel I MUST stay nearby because she doesn't know what to do in any situation. When someone comes to visit her, it ends with them visiting with me and I ask wife for opinion and try to get her involved and she responds. Oh, I'm just listening to you guys! Not true. she doesn't know what to say. I have become concerned about if I am doing the things I should for her and should I enlist professional help in the event there is something that might help her! I would hate to learn later that we could have taken a treatment or medication that might have helped her. She was diagnosed with AD by our FP several years ago and he thinks she should be in a nursing home except for the fact I told him I want to keep her at home as long as I can. I trust him and his diagnosis completely, but I wonder if she should see a neurologist regular to monitor her decline. If, as I have been told, there is nothing that can be done then there is no reason to employ a neurologist. I want to do every thing that might possibly help!
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Aides specifically for those trained to help w/AD care can be helpful to engage with them one on one. Group activities, adult day care and outings may be too much to manage, too much for her to manage and as others have said it might overwhelm her. But you could try the group activities to see how it goes. Work on the best time of the day for this. Often, mornings may be better as later in the day -- after trying to rally and or manage things for themselves-- even just listening -- it taxing/can be exhausting for them and late afternoon/early evening sundowning (frustration, agitation, etc.) may be or may not be part of what's going all. All to say, pick a time window when she's likely to be at her best, most rested and able to listen or engage.
Touch can be helpful too (some are adverse to being touched). Simple hand holding or perhaps a light, soft hand massage, neck, shoulders can do wonders. Some aides are good at this.
Getting outside -- fresh air, when the weather is nice, not too hot or cold -- can do wonders. Do you have a nice patio or garden, add a bird feeder and a butterfly bush to bring in some birds and butterflies to watch.
I found music (especially from the LO's youthful days) can bring joy. For my mom, anything from Elvis is like magic. She will "dance" in her bed (she is largely bedridden) but rocks back and forth, smiles and in her mind is "dancing with Elvis."
Long movies are too much, too long; but YouTube short videos of actors or old TV shows can be fun for them. If you have an ipad or tablet, there are lots of oldie but goodie type shows. With this video content, you can also slow down the replay speed (click the gear icon, and change the replay speed to something a bit slower if that helps them to follow it better)....
Old photos scanned to an iPad, tablet, a digital frame that runs through them (not too fast) or even in a photo album book. Ask friends and families (especially younger one's with an iPad/tablet to load some family pictures (grandkids, family pets, etc) and show them but not flipping through them too fast.
If art or travel was a prior hobby, many art museums have video tours of masters (maybe 15 mins, again play it slowed down a bit) OR travel companies/national geographic have travel video content. If you took a favorite trip to a place, maybe revisit via video. It is ok to play the same ones over and over, it generally is new to them each time.
If your LO loved or had favorite books, audio books may be an option. Play the audio book for maybe a chapter, day by day. If it is a book the read many times in the past it may trigger those old memories. Or have a family or friend read her that chapter when they visit or call. Or short stories may be better, easier to follow, only one chapter in length.
Some organizations/support groups/religious organizations have volunteers make calls to isolated folks. You might be able to arrange for a volunteer to call weekly for a 20-30 min call where the volunteer does most of the talking, work that out in advance and let them know what to talk about, just have it on speaker so you can listen and interject if needed.
Know that you are there for her and doing your best. And if the time comes when keeping her home is not a realistic or safe option for either of you, hope you can not beat yourself up if other care options have to come into play. None of this is easy, it is all heartbreaking.
All the best.
What helps (most people) is keeping her mind as active as possible. If there's an adult daycare near by, it would benefit your wife to attend and participate in activities, and be around more people. If does cost money but you also get a much needed break. If your wife qualifies for Medicaid, then the cost will be covered.
You can also find someone to come to your house and keep your wife company, play games with her, play music, sing, read to her, etc. once or twice a week for a few hours while you go out and regain your sanity.
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1) Play her very old TC shows, like ‘I Love Lucy’, where she may recognise the characters. She may follow along, even if she immediately forgets. Even the ‘canned laughter’ might cheer her up.
2) Get her a stuffed toy, or a soft ‘baby doll’ to cuddle. It’s comforting, it keeps some of her senses active, and she may find herself talking to them. It helps a lot of older women.
You can’t bring her back, so just focus on her being happy.
Is there a day care center that she could attend. My mom went to one and they have activities geared towards those with memory loss. She then also had socialization opportunities with others that were also diagnosed with dementia.
Along with this progression it is important for you to know how long you can manage care at home. Consider seeing a Licensed Social Worker in private counseling practice for a check up and check in periodically and to discuss your wife's progression and your options and choices. I am so very sorry. How kind you are in trying so hard to do this right, but know that there is kind of "no right way" and we all muddle through day to day and moment to moment. My very best and my heart goes out to you.
Sometimes we need validation that we are doing everything we can. I remember my moms cardiologist telling me what a great job I was doing taking care of her.
I thought I was going to cry it meant so much to me.
And actually it was aunts neurologist who told me she would do better the longer she lived at home.
My cousin regularly took her mom with Parkinson’s and Lewy Bodies to her neurologist for years. As cousin tried alternative remedies to make her mom more comfortable she did so with the approval of the neurologist and again it was helpful to cousin to have someone to discuss her moms care with that wasn’t just seeing her for the 15 min bums rush we get so often in a GP office.
It is a big job you have and I think it is good to get all the help you can. You must take care of you in whatever way is available and yes it is helpful to come to the forum. We care.
and it was true. His world was becoming the size of her world. I was the only visitor my mom could handle.
I really don’t think there’s anything that can be done to help her medically, but I would advise, trying to bring in a paid companion for her. A friends, mother has Alzheimer’s, and her dad pays his daughter-in-law to come over every afternoon, and do puzzles and mentally stimulating games with her. This arrangement has been going on for more than 10 years now, and I do think the mental stimulation has enabled her to stay home longer than she would have.
The important thing to know is that you cannot be her entire world of stimulation while trying to keep a house do the grocery shopping, laundry, and everything else you need to do just to keep afloat. That’s what my dad did, because he adored my mother and wanted to honor his marriage vows, but it also led to him ignoring his own health. By the time he was diagnosed with cancer, it was inoperable, and he died six weeks later. My mother had to go into a nursing home after all, and she outlived my dad by 2.5 years.
Caring for your wife means caring for yourself, too, and that might mean having to place her so you can be fully engaged with her when you're together.
reach out more to this group. I have felt so terribly alone and isolated. I have no family here to help. I do have someone who comes daily who is wonderful, but my husband is less and less cooperative to things like hygiene, showering, brushing his teeth, etc. She helps with that in the day, but I'm on my own in the evening. We generally eat, watch a little TV ( music shows, or comedies that he can enjoy and process ) and then I have to help get him to bed. He has FTD, and not only is his short term memory gone, he has physically declined. he uses a walker, but there are times when he simply can't move - it's like his brain can't communicate to his legs. Then we go from walker to wheel chair to walker, and it's really exhausting for me. I have no idea where we are on this journey, and what I will do in each case. I am committed to keeping him at home unless he becomes entirely bedridden, or doesn't know who I am. He is the love of my life, and I am his. He only wants me. He would die being away from me. I'm just sort of venting/ rambling right now because at least I know you all understand. Thank you for listening.
What I am going to suggest is that you contact Hospice, call a couple and interview them.
They will help with having a CNA come in at least 2 times a week to shower your husband. And the CNA would order supplies for you. A Nurse that would check his vitals 1 time a week and follow up with any medical problems/questions. And the nurse would order medications.
You would get equipment that would help you. A Sit to Stand that would help with getting him up out of bed, out of a chair and moved to another location, or to bed or into another chair. (Trust me it was a life saver for me! and as my Husband declined and I needed a Hoyer lift that was ordered.)