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Examine what your "triggers" are and try to find ways to avoid or modify those situations if you can. (For example, when my mom's incessant calling gets on my nerves I will put in earplugs or better yet leave the house for a walk around the block) And as Gndma1954 has mentioned, get support through frequent respite/home care/support groups etc. so that you aren't trying to give care while running on empty.
I am an only child, work 6 full days a week, and do the best I can to help. My parents very carefully moved away from and alienated all other family members so now they are very much alone.
My parents have a "Cadillac" Long Term Care insurance plan that they've been paying toward for over 20 years. It even pays for in-home help such as house cleaning, meal preparation, etc. We got lucky, a few months ago the doc's referred Kindred At Home to come to the house to give my dad occupational and physical therapy. There were additional services offered, that would have been PAID FOR by the LTC insurance.
Well, mom told the Kindred people they were intruders into her home. The KIndred nurse told me they kept the visits to the bare minimum because of my mom's behavior. Mom is worried about important things like, you know, someone might track dirt on the carpet. Evidently one of the nurses left a wet Q tip on a wood table and it left a mark. Mom was livid. So, she ran off what was a great source for in-home help.
Now they sit, all day, in silence. I am at my wit's end of what to do. Mom just wants to put him away in a nursing home and he's no where near that bad yet. I told her that her Long Term Care policy won't likely pay for a nursing home just because she no longer likes him.
I asked him this past weekend if he would rather stay there or move somewhere else. He said even though she's very mean he would never think of moving away from her and their home. It's so sad!!!!
Is your Mother caring for your Father by herself?
It sounds like she may be overwhelmed.
And is your Mother going to a Support Group? That might help her a lot.
Is your Dad a Veteran? If so there are programs that they may qualify for, Adult Day Care, Respite, Homemaker Help, and there is a program called VIP that is Veterans Independence Program it is designed to help keep veterans in their homes. Someone comes out to assess the needs and a "budget" is established and the money is used to pay for caregivers, someone to do yard work or clean the house. It does entail a bit of paperwork but well worth it.
If things don't improve for your Dad's sake I hate to say it but it almost sounds like your Dad might be better in a Memory Care facility than at home
Sometimes I need to remind myself of that, as I get caught up in some endless loop argument with my mother.
I agree that I would read a lot about end of life decisions. Does your husband have a Healthcare Directive? Did he want tube feeding? I'd try to reconcile how this refusal to eat may be part of his illness and the tube feeding is not without risks and may not increase his longevity. I'd try to honor his wishes.
I also would try not to put unrealistic demands on yourself. This is perhaps one of the most challenging things to handle in a person's life. Caring for someone with his condition in the home is a HUGE responsibility. The behavior of a dementia patient can be exasperating. Who wouldn't struggle with this? Maybe, you are expecting too much from yourself. Maybe, with help, you could have time to restore your resources and recharge your batteries. Then, you can devote more quality time with husband later on. I'd explore getting help. I'm not sure how much you have, but, 24/7 duties will wreck your mental and physical health.
I would imagine that it's very sad to realize that you may not be able to make a dementia patient happy, content or stable. It may be something that is just not within your ability to do. It's not your fault.
You sound like a wonderful and loving wife. I wish the best for the both of you.
If he can respond have you, during a calm time sat and discussed this with him?
Have you explained to him why it is important to you that he keep his strength up?
Have you allowed him to express his feelings as to why he does not want to eat? If he tells you it is because he does not want to live you need to validate that and understand what it must be like for him.
And at some point he may ask for the feeding tube to be removed, this is also understandable and as it gets towards the end of his life he will not need food or drink. To keep giving him food and drink it can create more problems. Obstructions, vomiting, and in some cases the food will sit in the stomach undigested.
If you have not had an "end of life" discussion with your husband and his doctors it might be time. If he has then you are a step ahead of many. At some point you might want to contact a Hospice to determine if he qualifies. You will have a great resource to help you and your husband with some very tough decisions.
I need to find a place for information, i feel like i am alone in this.
I found it helped to learn all I could about the disease. Reading and seeing pictures of what the damage looks like in the brain was useful. My mantra became, "This is not my dear husband. It is the damage in his brain."
We called the disease Lewy. More than once I apologized, "Oh honey, I'm so sorry I hollered at you. I'm really not mad at you at all. I'm mad at that darn Lewy."
I went on the Lewy journey with my husband for ten years. I know that it is considered to have one of the highest caregiver burdens, because there can be many behavioral symptoms and they tend to come on very early in the disease.
It really, really helps a lot if his doctors are very knowledgeable about the disease and can explain things to you.