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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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Don't put her in a nursing home until she can't respond at all and/or you are overwhelmed with her care. She will get the best care from you as long as you can manage it. You are doing the exact right thing. As you can imagine, she just wants to feel normal, and you are helping her in that regard. Thank you for honoring her dignity.
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againx100 Feb 2023
This poor man, and every other caregiver, can put someone in a facility whenever it is the right time. They don't have to wait until the situation is completely dire.
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OldArkie: Prayers sent, dear man.
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I recommend lion’s mane tincture and powdered MCT oil daily…and holding her hand. Just hold her hand. ❤️
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I just want to thank all of you who responded to gentleman. So many of the comments applied to my situation, others not so much, but I realize I need to
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.
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Grandma1954 Feb 2023
You really should start a post of your own to get replies, comments and suggestions.
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.)
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I agree with playing her favorite music. I just read an article that said even patients with dementia who cannot remember words to speak can remember every word to a song. That’s because the memory for words to songs are stored in a different part of the brain, not affected.
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Oh, I really do feel for you. You and your wife are my dad and mom. My dad was completely healthy, and my mother had dementia. It was so frustrating for him to watch her decline and become more withdrawn from the world, and she wouldn’t visit with other people or have lunch with friends. He thought she was just being stubborn, but she really didn’t have the cognitive ability to do any of those things any longer. I remember him sadly saying to me one day, “My world has become so small," and it was true – his world was becoming the size of her world
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.
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How about daycare or respite care at your local memory care facility? At home, you could hire a "Visiting Angel" who has experience with a memory care patient.

It is really time to make sure she has care 24/7 and it can't be just you. If you don't treat yourself with mental and physical care, you may be negatively affected which could put your future in jeopardy.

Neurologists are good for initial diagnoses and that's about it. A Geriatric Psychiatrist can evaluate and medicate her and educate you.

She's fortunate to have you in her life.
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This is all so hard, sorry you are dealing with this and bless you for all that you do. None of this is easy.

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.
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NYCmama Feb 2023
great suggestions. I particularly like playing music she loves, going through old photos, getting outside, and getting some outside help so he can get some downtime.
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You might want to try a 4-hr adult day care. They provide activities on a MC level. Yet she still can come home. If she likes it, then it will give you a little "me" time.
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A natural progression of dementia. My mom was very social until the last 3 years of her life. Before covid she went to a wonderful adult day care program one day a week. Also had a senior companion come in 3 hours a week. Gave me time to run errands or whatever. Later, her focus shrunk. Sje didn't engage. Her day was spent at the kitchen table going through the mail. It was always new. If cards came, she would write on them to her parents. I tried to find things to stimulate her but she needed too much direction. She died at age 89. She was sweet through it all.
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I am so glad you posed this question/situation. It was helpful to see the responses and see that the stance is to keep the loved one engaged even if it is a presentation of sorts. I actually had to make a list of things to talk to mom about. They consist of stories, situations that involve her or her loved ones. She doesn’t remember I told her the same stories before and she sometimes adds to them by saying “I remember that” or “and i said, ….” Which is logical but didn’t happen. Her short term memory is gone and her acceptance of her situation that makes her calm and relaxed is a blessing from God. I have found that it is best not to take her out because it is confusing and scary for her. I told my siblings to 1. Talk about what they are doing, 2. Bring up things they remember as children because she has a better handle on distant history, 3. Expect to do much/all of the talking. 4. The goal is to engage and get a smile! I did introduce 2 caregivers to her life and they come 4 hours a day every day. They have bonded with her and she is comfortable with them. The 4 hours are done where she gets 2 meals, walks, showers/bed bath, warm eye compresses-which she loves, lotions applied and skin massages. One reads to her from a daily devotional. The other watches tv with her (golden girls, andy griffin, hazel, etc.). While she has lost most of her words, she recognizes correct words and gives hugs on occasion when she is grateful and cannot find the way to say it verbally. Thanks again for asking this question, it was helpful and affirming.
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Wolfpack Feb 2023
Your mother is a lucky to have you. Excellent ideas!!
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Two little things that might make things SEEM a bit better:

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.
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There are many elements to caregiving. I would say to consider that it might help YOU to see a neurologist for your wife.
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.
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She looks to you for confirmation, acceptance, approval, security.
It is not that she does not know what to say...she is afraid of:
making a mistake, sounding foolish, by this I mean if she has not understood the entire conversation and says something "wrong" others may think she does not know what she is talking about. (It does not matter that others will not judge her she does not want to be "wrong") I read a while back that it can take someone with dementia 45 to 60 seconds to process what was said, formulate a response...if you are like me in 45 seconds you are on to a totally different subject. It is no wonder someone gets lost in a conversation.

If there is an Adult Day Program in your area getting her involved might help. If there is a Senior Center that has programs for people with dementia that might be an idea. Many areas have Memory Cafe's where you both can go and it is a "dementia friendly" gathering.

As far as a neurologist that can monitor her decline...you can do that better than any doctor. You know from day to day, week to week, month to month what changes she has had.

the best way to help her is to take care of yourself, get help. Caregivers that will help you. Programs like Adult Day will give you both a break.
When you feel ready contact the Hospice of your choice and see if she qualifies. you will get the support from your Team. You will get all the equipment and supplies that you need to help you keep her at home for as long as possible. (I say that because when it gets to a point where it is no longer SAFE for you to care for her or safe for her for you to care for her at home you need to make the tough decision to place her simply for the fact that her care is ore than you can safely do. That day may never come but it might....
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OldArkie Feb 2023
Grandma 1954
I failed to mention she has NO,,, short term memory! She can't follow a conversation, partly because she can't remember what the subject was and partly because she forgets what was just said. Strangely, she responds to me when I ask her casual questions, and seems to know what I ask. As someone suggested, every patient has different experiences and responses. I do my best not to ask her things I know she can't answer and, even though she is aware she has the illness, we don't dwell on it. I live in an area with limited services for her problems, and, sadly, the local Area Agency on Aging doesn't seem to be especially empathetic with our problem. Also, the local senior care facilities have very limited help because they can't hire anyone to care for seniors!
I really don't expect any help... I mostly just want a venue to unload my feelings now and then, and this forum does that. Thanks to all who respond!
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You are now the expert and your own opinion and observations at this point is much much much better than any medical person. If this is AD then this will progress and you will be witness to that progression and what works best for your particular loved ones. The reactions of patient and family are as individual as their own thumb prints.
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.
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OldArkie Feb 2023
Thank you, Alva, for your support! I fully concur with your message. The thing that is so overwhelming is knowing that I am singularly responsible for her health and well-being... mentally and physically. She no longer helps make decisions or gives opinions... she simply looks to me to do what is best for her. And to make it harder, she cannot always tell me what is wrong if she feels bad. Thankfully, she is physically pretty healthy... so far!
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I feel for you. My mom is very similar to your wife. She doesn't really converse much. When she has a visitor she will either just sit and "watch" the conversation like it was a TV show; or she will insist on staying in a different room where she won't "interfere." I think part of this behavior is because she has trouble following the conversation, trouble coming up with a response, and then saying what she's thinking...it comes out very delayed and as disconnected words. Part of her realizes this and she is mortified. So she retreats. She seems to enjoy the show however, even if not speaking much, so we are happy all being in the same room at the same time, where she feels connected to others for awhile. This is where we are right here right now.
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OldArkie Feb 2023
It is heartbreaking to watch them fade away, day by day, and there is nothing to be done. I am sole caregiver for my wife and, believe me, it is a lonely household that used to be so active and vibrant and filled with laughter and joy and kids and a fun place to be. We had an old dog one time that we loved so dearly, and when she got old and was near the end, she just lay in the floor and looked at us, hardly moving a muscle, trusting that we would take care of her and protect her! Too much sadness in this old world!
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When my MIL stopped speaking and walking, my husband's visits only were about taking his computer with him and showing family pictures. Sometimes he would see a glimmer in her eye. This went on for nearly 3 years before she passed. So this phase could last a while.
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OldArkie Feb 2023
Sadly, we have no idea what is going on in their mind... if anything! I sometimes ask my wife what she is thinking. Reply is mostly.. oh, nothing!
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Talk with somebody from the Alzheimer’s society and search on their website for ideas. I know she probably has Alzheimer’s and doesn’t know what to say in conversation but I find being monitored by a neurologist is still very helpful. Perhaps one of the medicines would be helpful as she progresses and I think you may need an official diagnosis from a neurologist in the future to get appropriate services.
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OldArkie - I am so sad for you and your wife. You are right that there's nothing to be done and no reason to see a neurologist who can't do anything for your wife.

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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Beatty Feb 2023
Couldn't agree more. Add in a regular friendly visitor. It matters not if they are an old friend or a paid aide. What matters is your wife will learn to trust them, be with them. A lot can be done with out talking: looking at photos, picture books, doing easy puzzles, listening to music.
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There really is nothing that will help her medically.

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.
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OldArkie Feb 2023
I wish she could! Her memory is very bad and getting worse. She can't participate in a conversation, much less a group activity! I have asked her if she would like to try a senior activity center and she definitely does not. She can manage one to one visits but a group of 3 or 4 or more completely overwhelms her! I think likely because she can't remember what to do or say and it embarrasses her... so we try to avoid crowds.
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