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?
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.
Beat Wishes!
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.
The Alzheimer’s Reading Room is full of carrot and stick ideas to get a reluctant person to do what you want them to do. If she is in the stage you describe she needs to be led to shower not told to go do it because it will help.
You need home health help, my father became bedridden within a matter of days and I wasn’t strong enough physically to care for him any longer by myself. His doctor wrote a recommendation for hospice care, they have been wonderful in coming and caring not only for dad but also me. They do have to be revaluated every 30/90 days if there is an improvement then their care stops. They also have social worker that will help you navigate the Medicaid system which is my next step as I can’t give dad the level of care he needs and we are going to try and place him in a nursing home, should he live through the fall he had which fractured his femur.
Writer2428
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.
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.
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.