I don't want to be my Mother's answer to loneliness. Is anyone else go through this kind of thing?
Mom is 86 with alzheimers. She still lives in her small home but the disease is taking its toll. She has no memory left, says every day that 'Im kind of confused today', can no longer manage her finances, and isolates herself. She also does not believe she has alzheimers, which is common I'm sure. My problem is that by not being open to visiting a day center, she only has me to come around, to visit, do her shopping, etc. Without her memory, she is unable to carry on any kind of conversation so unless i talk, she just sits. I end up trying to fill time talking about something, anything, and its not easy to do for hours. She is extremely stubborn and has been independent for the last 30 years since my father passed. I feel guilty not wanting to spend hours over there just sitting, and shes always quick to say...when will you be back to see me? I dont want to be her answer to loneliness and although everything I read says social activities are so important, she refuses to consider assisted living or any social gatherings. She lives 30 monutes away, which is not far, but ive limited visits to every weekend...and i feel bad that shes lonely but i also dont want to feel guilty that im not giving her more of my time. Does anyone else go through this kind of thing??
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Because she lived in the country my mother was basically housebound for many years after she lost her eyesight and couldn't drive. Thankfully she developed a network of telephone friends, and she also had a caregiver that came once a week. She never complained of loneliness but looking back now I'm surprised she didn't go out of her mind with the isolation. I often think her quality of life would have been so much better if she had left the farm and moved to a retirement complex, but she was reluctant to make a change and we were all busy living our own lives and content to maintain the status quo.
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Your mom has been independent for 30 years. Yay! Celebrate that "stubbornness" -- many widows/widowers start becoming dependent of their children almost immediately. Bless your mother for not doing that to you. But now she has a devastating, terminal, chronic condition. Her brain is damaged. She can't help needing to depend on someone now.
She is not capable of making decisions in her own best interests. That task falls on you. Sooner or later (probably sooner) she is going to be completely unable to live on her own. You need to prepare for that day. If you have siblings, it would ideal if you can all participate.
The real challenge is that most people with dementia lose the ability to make good decisions long before they meet the criteria for "incompetence" in the legal sense. In order to force her into a safe environment you would need to be her guardian, but your cannot become her guardian if she is not legally "incompetent."
So, start looking for a good environment for her, and start thinking of how you might persuade her to move into it.
I am very sorry for your situation. Please do not "pull away" from her. You do need to protect your own interests and not to get sucked into doing more than you can reasonably do. But she needs someone to make good decisions for her, to save her from the stubborn independence that once was a positive attribute, and help her feel valued and loved.
I lived with my husband's dementia for 10 years. My mother now has dementia. I have some personal experience with what dementia is like. I wonder how my own kids will deal with me if I ever get dementia? I sincerely would not want them to put there own lives on hold for me. I've told them that now, but who knows what I would say if my brain were damaged? But I also sincerely hope they never stop loving me and trying to look out for my best interests. I hope they never pull away.
I have a friend that used to be in home health some time ago. She goes over there every so often to visit. At first my mom was like today is not a good day and I just ignore her. Once my friend is there then she doesn't ever want her to leave. I met with a home health agency seniors helping seniors since the companions are older and my mom can have someone closer to her age. The agency has hired my friend after I asked about the hiring criteria. Next month she will be there two days a week for three hour visits to start. As far as my mom is concerned, it's just a visit and they can talk, go out, do whatever. I don't know if that's an option, but I think it's important to integrate another person or two who can be around consistently for companionship and to observe the situation given that it sounds like your mom may need a facility soon. That's the other thing I'm working on. I'll be visiting some AL facilities so I can know what's available and what the process and wait list looks like.
My parents are still in there home and I'm stressed out so I know I couldn't take care of them like that. I thought at first I could but I'm wiped out now and the mental stamina required, not to mention the physical, is just too much for anyone. I'm only 51 and thought they might out live me here at this rate. Those who do it have my utmost admiration and respect.
Years ago when my dad was sick I went through a bad bout of anxiety. I talked with a counselor in Canada over the phone each week for a year. I live in VA, strange as it may seem, it proved invaluable. I can look back and see how it may have been God's way of preparing for now. There are two things I recall distinctly that I think about often: he said Jacky stop holding your mother's ropes. He used a visual of going across a tightrope and me trying to get her and myself over at the same time. His point being you can't provide for her every need and expect to be well. It will never happen. Help where you can but don't try to live her life. The second was another visual of packages going down a stream. He said you know the content of them (ie: fear, dread, worry, etc) so no need to open them over and over. Just observe them passing by on the water and go on. It may sound stupid, but for some reason the meaning behind it really seems to help even now. Others have given similar examples above and this is right in line with that thinking. My prayers and hugs are with you, we know and are with you. Jacky
You say your mom still handles her hygiene and meals. How are you sure she is doing that. Dementia patients often lie about what they can do. My cousin would say she had bathed, but the shower was not even wet. She would lie about practically everything I asked her. Food was not eaten, bills not paid, medication not taken, laundry not done. She didn't know what she was saying. She may have even believed it, but it was not in reality. Posters upthread are right. Once you are out of the early stages of dementia, it's not safe to stay alone. They can start a fire, harm themselves, get lost, etc. It's just not safe.
Rarely, will a person with dementia tell their loved one that they are not able to care for themselves and that they need to go somewhere they can get help. It normally doesn't happen that way. Usually, there's a lot of negotiations, doctor visits, discussions, and other interventions to get them on board.
I think I might plan a visit with your mom and observe what she is actually doing around the house for a couple of days. That way you can see for yourself if she is able to care for herself. It is often a crisis or some incident that gets the family's attention and highlights that things are not going well inside the home of a dementia patient. You're doing the right things. I hope it works out well for you both.