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Mom is 85, has lived in her home for almost 55 years, and has always been very independent. Last year she was hospitalized with a pulmonary embolism and also treated for a detached retina. Now, she is generally in good physical health, but suffers from dementia -- long term memory is great but short term is getting progressively worse and occasionally suffers panic attacks.
I'm her single son and have been her primary caregiver for almost two years -- managing her finances, making sure she has and takes her medications, doing yard work, grocery shopping, bringing meals, taking her to doctor appointments, etc. (all the stuff caregivers are familiar with). I’m so burnt out emotionally, mentally, and physically that I don’t know how much longer I can keep this up. My older (divorced) brother helps out some, but I feel like it is all on me.
We brought up the idea of moving her to assisted living late last year, but she wanted NO PART OF IT, so we dropped it. She also does not want any outside caregivers coming into her house to assist her. Nevertheless, I knew the day would eventually come when she would need help, so I did a lot of planning over the past year in preparation for this event including evaluating different assisted living facilities, putting her name on a waiting list, getting her finances and estate planning in order (including Living Will, DPOA), etc, so we would be ready when the time came.
This past summer after a panic attack SHE brought up moving into assisted living and wanted us to make the move before winter arrived. She said she would not fight us on this issue and if she protested, we should ignore her and continue with the move. This was a HUGE day for all of us!!!
Over the past few weeks she would ask when she was moving into her new apartment and I would show her on a calendar. On moving day, she was ready and willing to go. She has been in her new apartment for less than a week and every time we visit, her first question is always “when am I going home?” She gets so very angry with us and so worked up that we have to get assistance to calm her down. She cannot take care of herself at home and we can no longer provide the care she needs (even though she does not think she needs any care).
My brother has taken a more active role in her care now that she is in assisted living, but I still feel emotionally, mentally, and physically spent. I’m not sure if or when mom will accept her new living arrangements or where I can turn to for support/help for her or me.
Any assistance is greatly appreciated -- thanks in advance!!!
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Oct 29, 2012
Perhaps you could visit less and give your mother a chance to settle in without the disruptive scenes with her sons. Have you talked to staff? Is she OK between your visits? I understand that some care centers recommend that family not visit at all for a certain period -- 10 days or a few weeks -- to allow a settling in. I don't know if that is always the best approach, but since what you are doing now doesn't seem to be working, maybe less frequent visits to begin with is worth trying.
My heart goes out to you. You are doing the right thing, and the thing that your mother asked you to do. It must be very hard to see this result.
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My mom ended up in a nursing home due to her broken hip, but she did not work with PT in order to regain the ability to walk again. However, her overall health is much better physically than it ever was at home, but the dementia continues to worsen. She very often asks when she can go home, but I tell her that while that would be very nice the doctor does not consider her a safe discharge. I think it is good that my mother thinks she has been there only 4 months when she has been there 4 years. She complains about being bored, but does not go to any of the activities. She would be bored at home too. I have heard of people with dementia going home and then when they got there asked to go home.
I shared all of this to say that jeanngibbs has given you some good advice. She may or may not reach the point where she no longer asks to go home, but that is beyond your control. All you can do is take care of yourself and be supportive of her where she is which it sounds like is where she needs to be plus she asked to go there. People with dementia have a hard time adjusting to new locations and this is possibly what is going on with your mom. It is painful to watch a parent decline, but try to hold on to the good memories of her. Be glad for simple things like her still recognizing who you are.
It is good that your brother is taking a more active role now. Take this as your chance to recharge from being so drained.
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Oct 30, 2012
Thanks so very much jeannegibbs & cmagnum for the comments and advice. This was my first time posting and it made me feel better to know that I'm not alone in this.
Even though it may be hard to do, we are going to try and give it more time between visits and hope that she develops a new routine/attitude. The staff has indicated she is visiting the cafeteria for meals, regularly, and is venturing out of her apartment to sit in the main common area with other residents to observe, occasionally striking up a conversation.
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My mom talks about going home every single day so I understand the stress that this causes. Some days she asks to go home, other days she begs to go home and some days she demands to go home. I have been visiting her everyday since she entered Assisted Living 4 weeks ago, but I am skipping today. The staff says she is okay when I'm not around and I shouldn't worry so much, but she calls me crying and begging. Then I find out that she is perfectly fine with the staff. It is very frustrating and I wish I had some good answers for you. This is a journey that we just have to learn as we go and make the best decisions we can.
It's so nice to see someone who wrote something 6 hours ago.......My mom went into assisted living in August and it's been a nightmare. I did the same thing you've been doing, visiting every day, and the staff tells me she's fine when I'm not there. I have started taking days off here and there, but the guilt is killing me. I feel so bad leaving her there. Every one tells me that I've done the right thing........but that look in her eyes when I try to leave is horrible.....The staff is wonderful.......the nightmare isn't the place, they're great. It's that she wants to go home. Unfortunatlly home happens to be 26th and Wells in Chicago where she grew up.......I'm taking tomorrow off which will be a big deal for me. I can tell you this........when I go back after missing a day, she never even mentions that I wasn't there the day before.......just happy to see me and sad when I leave. Good Luck......let me know how your day off went and I'll write back and tell you how my day off tomorrow goes for us........Journey....yes!!!!!
Oct 31, 2012
We've decided to hold off on seeing mom for a couple of days and then meeting with the AL staff prior to visiting her to see how she responds . . . never quite sure how she'll react when we see her, but hoping for the best. It IS a journey and we do the best we can . . . one day at a time.
Good luck abby33 and Susanbartusiak; take care of yourself!!!
Nov 1, 2012
Took off yesterday and went back today......she was fine when I got there....didn't remember too much about yesterday. Same thing today when I tried to leave.......The staff thinks that I should start coming every other day. I was there on Monday for the Halloween party, and she focused on me. They think that if I wasn't there all the time she'd participate and join in. Sooo hard....it's my mom, ya know? I'm taking off tomorrow but going on Saturday and Sunday........Take care all!!!!! Our prayers are with you :)
Anyone in the Chicago area?
Apr 18, 2014
All the comments and advice given has been great. Wish I had read this in the fall of 2012 when my mom was moved from her home to a ALF. She has never adapted and still hates it. Her dementia is getting worse and she takes most of her wrath out on her daughters. I live out-of-state and visit 3 to 4 times a year spending at least 8 hours a day with her. Last fall, every time I had to leave her till the next day, she would start to say 'what do I do now--what's the point--there is no one here to take care of me if something happens, etc. Will be visiting her in less than 2 weeks and for the first time I'm not looking forward to it. So sad.
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