We look after my 83-year-old father-in-law, who lives above us. He has always been extremely dependent on my husband (the "good" son--too long of a story), as he does not speak any English after living in Canada for 40 years, and is illiterate in his own language, Portuguese. Before we married I knew that we would eventually be responsible for caring for him, but it has come sooner than we expected--we're both in our 30s, and needless to say do not have much experience or knowledge about aging or senior caregiving. It is ending up to be so much more stressful than we anticipated.
He has early-stage dementia, recurrent gallbladder attacks, and is wasting away (he's about 115 lbs) due to having nausea and vomiting, and no appetite. He has lost all interest in bathing, cleaning, eating, and going outside. Although the medical issues are challenging, his constant demands for attention is what is causing the most stress. He will call my husband up to 15 times a day, and several times during the night. If we cannot fulfill a request right away, he will start crying and yelling, saying that God should just take him because nobody cares about him. We've managed to get Portuguese-speaking PSWs in for one hour each day, which has been a huge help with bathing and dressing, but we both work during the day and are only able to see him in morning and evening. He will start to cry when we leave, and ask us how we could leave him all alone. We can't even go away for a weekend, as there is no one else to give him his medication in the morning and at night, and he will start crying inconsolably, saying he will be dead by the time we get back.
We are doing our best to care for him, but it is never enough to make him happy. No matter what we do for him, he has no concept of boundaries or respect for our own time or space. He is completely wrapped up in himself and cannot see past what is affecting him personally. (Not just the dementia--this has always been a personality trait. Dementia certainly doesn't help though.)
>> Example >> Yesterday, after getting his dinner and medication and making sure he had everything he needed, my husband went to go downstairs. "Where are you going?" he demands. "I just came home from work. I have to go take a shower." "No! Take a shower tomorrow!" Sigh...
Although he complains of loneliness and that he wants to someone to be there by his side all day, he has flat out told us several times that he will kill himself if we move him to a nursing home. We are trying our best to respect his wishes, but we are reaching the end of our rope.
My husband has his own mental health challenges, and the stress of this situation is scaring me for his sake. He is not a pushover, and he will stand up to his father and knows when to refuse irrational demands, but the stress is still getting to him, as is the interrupted sleep. I am trying my best to take as much of the burden off of my husband as possible by learning some Portuguese and taking his dad to all of his appointments and coordinating all of the home care services, but now I am feeling burnt out and am having trouble sleeping.
Don't get me wrong: my father-in-law's health and well-being are important to me. I want him to be as comfortable and content as possible, but he is not the priority. My husband is. (I guess I should be on that list too.)
We do have Power of Attorney, so if worse comes to worst, we do have the ability to move him to long-term care, but even thinking about it brings on a guilt storm.
How did it end up for you/them? I would really appreciate any input. Thank you.
I loved the story of your mom going to the doctor. It's so true about not being drawn into the game of conflict and argument. The other day when he jutted out his jaw and yelled that he didn't want to eat breakfast, staring at me and expecting me to argue, I just put my hand on his shoulder and an amused smile on my face, and said "Oh, Pai. Come on. Just one spoonful." It kind of flipped him out of argument mode and he sat down and ate a few spoonfuls. :)
My mom used to say she would die on the way to see the doctor. I got so tired of trying to reassure her that I finally just said " ok. If you die, which funeral home do you want me to take you to?" Boy would I get a look for that sass. But you have to stop playing the game with him. She only went once a year to the doctor, so sometimes when she complained I would say "well, if we don't go, they won't give you your meds. It's up to you. If you don't want to go, we won't go. You are old but you have your mind. Whatever you want to do." She would get ready and go. And would have a great time by the way.
Take care and come back and let us know how things are going.
I'm curious, did your loved one have a change in personality associated with her dementia? I've read that often happens but hasn't really been the case with my FIL. My husband is still having a hard time accepting the diagnosis at all because his father has always been a somewhat difficult person (he's been sober for many years now, but he was absent for most of my husband's childhood due to alcohol abuse and violence) and he has never been able to be reasoned with, so the kind of behaviours that I described in my post are not out of character, but instead seem to have been amplified by the dementia and memory loss, and possibly anxiety/depression.
There is much more to the story, as I'm sure is the case with everyone's caregiving experiences, but we really do want what is best for him, although it may not be what he wants. And it's a struggle for my husband to care for a parent who has never taken care of him, and to be clung to so desperately.
We're meeting with his geriatric specialist on Thursday, and hopefully we'll be able to find out more information as to what to expect and further insights on the care he needs.
Often people with dementia think that they can manage, when in fact they are incapable of handling the most basic daily tasks.
My LO was insistent that she could live in her home with the assistance of neighbors checking on her every day or two, but the reality is that she could not prepare a meal, bath herself, use a remote control or even make a phone call. Their reasoning is impaired and it's up to the caretaker to make ensure they are taken care of. They may say all kinds of things in fear, but, it doesn't change the fact that they need care.
No doubt your FIL is frightened and confused. That's why they don't like being alone. Things look different. My LO would describe things looking strange, like she was in a dream. It frightened her. She wanted me there at all times. If that's not possible, I'd find a place where it is possible. Perhaps, his doctor could help.
Please keep in mind that he's not calling your husband 15 times a day to be annoying, but, he forgets about the previous calls. And regardless of his past, people with dementia cannot recognize boundaries, and expecting appropriate behavior is not feasible. It will likely grow worse as he progresses. I'd read a lot about how the progression will go, so you know what lies ahead and can plan accordingly.