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No one in the family wants to consider home health care now. I am the farthest thing one could ever define as a domineering husband. My wife and I have always maintained a 50-50 relationship in all decisions. We cannot now. I foolishly try to talk to her because that is what I have always done. I try to tell her that I can help her if she will listen to me and do what I say. This is useless, as she cannot understand a word I am saying and will forget the entire conversation within a few minutes of having it. She has also lost most of her communication capabilities. In MOST cases, she just strings unrelated words together. She often tells me about people with whom she has spoken in our house ... people who do not exist. Today, she has a very bad cold. She will take the medicine I give her, but when I told her that the steam from a hot shower would help her congestion, she rejects the idea. She has eaten very little in two days, but rejects my offers of any kind of food. Her daughter told her to take liquids. She does not remember that, and when I remind her of what her daughter suggested, she rejects that. She can become physical, throwing things. I have told her that I love her and that, if she will just let me lead her, she can have a good life here at home. No logic penetrates. I must get her to do the things that will sustain her. How do I do that?

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Its time to remove the husband hat and put on the caregiver hat. She is now unable to make choices that are good for herself so dont allow her to. Logic and reason dont work. I dont give options when there really aren't any. Honestly people are so worried about "dignity" and how you word things but the truth is usually the same way you would deal with a toddler works for dementia/Alzheimer's. I only ask if they WANT to do something if there is really a choice. Being clean isnt optional but every case is different as far as what triggers irrational behavior. Being incontinent is upsetting to my loved one and so when changing her brief I tell her we are changing her dressing because she doesn't want a sore on her bottom instead of telling her shes wet and needs a change.
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Reply to ChrissyB
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Writer, hate to say this, but it sounds as if your wife is past what you can do for her..... I work with people with dementia and Alzheimers, and can tell you that reasoning with them is useless. For the most part, they forget instantly what you tell them, and actually, their reality is different from what really IS. It seems to me that a memory care facility is a real good idea now; how to pay for it is usually a question, but she can hurt herself or maybe someone else, or a pet, if you have any, because she isn't living in your reality - she just doesn't GET it. You probably should have a doctor (preferably a geriatric specialist) evaluate her; not impossible there is something wrong such as a UTI (which can cause most of this stuff). If you do, you'll learn a lot more about what can be done for her - and you.
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Reply to mally1
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Your situation is very difficult. So is you wife’s.
You mention that “everyone in your family doesn’t want home health care”.
Who is “everyone”? Do they help care for your wife? Have you tried it? Even if you had help for a short while I’m sure you, as experienced as you are now, would pick up very soon on little things that might help you in your caregiving.
Also let me suggest Teepa Snow videos on YouTube. She teaches how to work with dementia patients.
But immediately you need to be aware that your wife could be dehydrated if she isn’t getting enough fluid.
Are you tracking her vitals?
Try popsicles or water filled fruits. The steam can also be in a pot and she can sit with a towel over her head and breath in the steam. Demonstrate for her.
Or sit with her in a steam filled bathroom. I know you will feel better when she does.
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Reply to 97yroldmom
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I agree with everyone. Looking back I now realize Mom lost her reasoning first. If your wife is not being able to speak a complete sentence that makes sense she cannot understand what you are talking about. Talking it over does not work. I stopped asking Mom what she wanted when we went out to dinner. I just ordered what I knew she liked. Kept a mug of water near her.

Trying to make decisions really frustrates them. Instead of asking just do. Like said, they get like toddlers. She may not even know u as her husband just someone she is familiar with.

I too wonder who is saying, no homecare, and do they help. Your wife is to the point she cannot be left alone. I believe we r not made to be together 24/7. You need time to yourself, even for just a couple of hours. Having someone who can sit with ur wife would be good for you.

At 69 I have to say this hit your wife young and at the stage she is at. Good Luck on this journey.
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Reply to JoAnn29
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Writer2428 Dec 11, 2018
Thank you all for kindly taking the time to suggest answers. I understand what you are saying. I stopped giving her choices a long time ago. I order food for her, and I fix food for her. At present, she just refuses. I tell her to eat, to drink ... she says NO. I don't know what to do at that point. She can become physical. We are in our third day of this refusal now, and if she becomes lethargic, I will immediately take her to get medical help. I may have misled some of you by saying that the "family" does not want to consider home health care now. Her daughter says we need to consider some kind of expert care. I worry how we are going to afford that, and I am stubborn. I never give up. I am still trying to manage on my own. OK. That is not working. She has a geriatrics specialist, and we have an appointment with him in 9 days. I intend to call and ask for an earlier appointment. I am not young, and I am wearing out. Again, thanks for all your suggestions.
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If she is congested, putting Vicks vapor rub on the bottom of her feet then cover with cotton socks at bed time will help relieve some of that without the potential for her catching a chill with it on her torso.

If you need home health please do not let others make that choice, unless they are willing to do it they really have no say. This is not a solo job.
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Reply to Isthisrealyreal
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Who is deciding home health is not wanted if u are the only one living with your wife? It’s no one else’s say so except yours. The others have obviously not witnessed your struggles. Go ahead and call your wife’s dr and ask for home health. Medicare covers it. The dr or nurse practitioner will have it approved and set up. My sister an RN got it set up for our father as we witnessed his decline and my mother struggling physically with his care... they will even send aides to bathe her every week and will send an RN out weekly to take her vitals and assess her for further care and the NP will come out also to see her and renew and prescribe meds xor any issues .... it’s worth it’
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Reply to Sherry1886
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mmcmahon12000 Dec 12, 2018
No they don't. Medicare only covers home health visits if its related to physical therapy or a skilled nursing facility. Outside of that your responsible for any home health care out of pocket. Unless you qualify for any type of special home program thru Medicaid, your on your own.
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Thank you all for kindly taking the time to suggest answers. I understand what you are saying. I stopped giving her choices a long time ago. I order food for her, and I fix food for her. At present, she just refuses. I tell her to eat, to drink ... she says NO. I don't know what to do at that point. She can become physical. We are in our third day of this refusal now, and if she becomes lethargic, I will immediately take her to get medical help. I may have misled some of you by saying that the "family" does not want to consider home health care now. Her daughter says we need to consider some kind of expert care. I worry how we are going to afford that, and I am stubborn. I never give up. I am still trying to manage on my own. OK. That is not working. She has a geriatrics specialist, and we have an appointment with him in 9 days. I intend to call and ask for an earlier appointment. I am not young, and I am wearing out. Again, thanks for all your suggestions.
Writer2428
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Reply to Writer2428
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Writer, I know exactly how you feel. I am going through this now and have been for a few months. She refuses to eat vey much if she eats any of what I fix for her.tonight I fixed some tempura fish and gave her small sections of like finger food and she ate that. Progress, new trick. No plate. I will continue to do this. The PCP and I tried the Boost, Ensure stuff but she did not like that. Might have been too sweet. This last week I have been using the powder version of Ensure and she will drink that. It is not as sweet and I can regulate just how sweet it is. I also got her to eat a pancake as finger food with only butter on it. that worked also.
Currently she is having problems with her right hand and cannot hold an eating utensil. It may be gout. Treating that now as well. She has lots of pain in that hand. Resist taking her other meds. Most of the time I have to put the pills into her mouth and then try to get her to drink and swallow. This is working so far.
She will not talk to me or even answer simple questions.
She is getting weak in her legs and is afraid of falling even with my help. Last week she could step up onto a curb. This week she is afraid of the shortest steps.
She has gone from 165+ lbs. to less than 140 lbs. this year because of not eating mostly. Had her checked for UTI and that came back negative.
She ignores me if I try to talk to her. I have to turn the TV off to get herattention to do anything.
I am going to call her dementia specialist to see if I can get her appointment moved up for a consultation/evaluation.
I am fearful that it is getting closer to the time for her to go to a facility very soon.
I am going to look into some sort of home health aid if for nothing else thaan to bathe. It takes well over an hour to bath her and dress her afterwards. Although I am becoming better at blow drying her hair. But she is getting worse at letting me.
We don't go out to eat these days because of the possibility of one of her outbursts and incontinense (sp). I am now hiring a companion to be with her at home while I go shopping. It is because of the above and she is now having difficulty getting into the minivan.
I hope there is something in this that may help you and I want to thank you for sharing.
Oh and we have no relatives to interfere and friends are no where to be seen. It is just me and the help from the great folks here.
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Reply to OldSailor
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It really sounds like you are trying to do the best thing for her. Don't you think the best thing might be getting trained professionals in to help you?

When our patient started resisting eating, it was suggested that we not serve a big meal that might be overwhelming. Instead, it was suggested that we have small sandwiches, little cups of soup, small milkshakes, cut up fruits...small finger foods...available on a table without commenting or suggesting anything to her. It helped if someone picked up something and started eating it...to model behavior.

The less words the better at this stage. Try communicating with gestures and smiles and nods. It's a terrible burden to be the only caregiver. Please consider getting help in. The local Alzheimer's association also gives classes to caregivers where you might get both tips and support.
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Reply to anonymous594015
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Writer2428, as sole caregiver, bless your heart. However, its very important that you take care of yourself too! If you don't take care of yourself, how can you continue to take care of your wife? If its a matter of pride, put it aside for the sake of your long term health. Your wifes' condition may be a long journey...you'll need help! There's no shame in accepting help, it will give you a much deserved respite and enable you to get re-energized. Lots of extremely excellent advice on this site to help you be successful!
Beat Wishes!
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