We have a caretaker for during the day when we go to work, but she won't stay alone, if we need to go to store, etc. We can never go out spontaneously - even to supermarket, it's getting worse. I am beginning to feel like a prisoner. How can I deal with this? I am having anxiety and want to try to keep her with us as long as we can. We are doing all we can to help her - it is exhausting as she cannot do much on her own without assistance. Any advice?

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Thank you all for your advice. I am going to pursue getting as much help as I can for my mom. I have now called Medicaid to see if my mother is eligible. She has no money left with the exception of her social security monthly income. Most of it has gone to pay for caretaker help the past five years. She may now be able to get some assistance. My husband and I have been taking care of her these past 13 years and she has really taken a downturn the past two years. My sister helps on the weekends. We want to keep her here with us but it is getting very difficult. She has fallen several times in the past two months and I'm worried sick, as she can't be left alone. The cost of additional help is hard as we three are all supplementing the caretaker who comes four days a week so I can go to work. It is very hard but many people are doing this. Thank you all for your advice, reading all the valuable information on this site has helped.
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My Mother could stay alone and did. But if someone was visiting for a few days, she wouldn't let them go out. I am talking a 72 yo daughter, could not go out to lunch! I didn't understand that and I would just say "bye, I am going to lunch. I will bring you something." And I would keep walking. My sister couldn't do that, for some reason.

But, you have to have a life. You have to get out, whether temporarily or permanently. I wish you good luck.
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Can you hire the caretaker to work more hours so that you can get out of the house more often?

Unfortunately as your mom begins to need more assistance you might have to adapt and change your schedule to suit her needs. Is this fair? No. But it might be necessary. Enlisting more help (by having caregivers) in caring for her might be your only solution. You shouldn't have to feel like a prisoner and we all have things we need to do, things we need to take care of, errands that have to be run. If your mom is not safe at home alone you're going to need some help. My dad, who lived with me, didn't have the money to hire caregivers so when I had to leave I dragged him along with me and he sat in the car while I ran through the grocery store like a madwoman. It took a lot of planning and a lot of work to get him out of the house. I had to safeguard my care against incontinence and repeatedly tell my dad that I would be right back. It was a race to see if I could get my stuff done before he got bored enough to try to venture out of the car on his own. It was a mess.

If your mom can afford caregivers there's your solution.
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People with dementia do usually reach a point where they cannot be left alone. Sometimes they insist they not be left alone, and sometimes they say you are being silly and of course they can stay alone. Either way, it is not safe to leave them.

So, as caregivers, we really do give up our option to go out spontaneously. I sometimes asked a neighbor to pick up a few items for me at the store, since I could not leave my husband alone. It was very helpful to have in-home help, and even a volunteer, but those were always scheduled in advance. I couldn't suddenly realize I was missing an ingredient for supper, or that I needed something from the drugstore. And I certainly couldn't accept a spontaneous invitation to meet a friend for coffee.

So I understand your anxiety. And I know it is exhausting at this stage of the dementia. I can offer empathy, but I am not sure about advice.

Would it help, do you think, if you scheduled a caretaker or companion for some hours outside of your working day? I know that is not "spontaneous" but it might relieve some of the stress.

You talk about "us" and "we" -- do you have a partner or spouse? Could each of you have some "me" time each week while the other stays with Mom? You go to a book club on Saturday mornings, and he plays poker with the guys Friday nights?

Do you arrange respite care so you and your partner can get away for short vacations?

At this point it would seem a shame to have to move Mom to a facility if you can possibly work out ways to deal with your anxiety. She is not likely to live many more years. But if it is necessary for your own sanity and health, do what you have to do without feeling guilty. You have done an amazing thing for her all these years. You deserve to feel proud.
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Call the county social services and see if they can send you an aide or a visiting nurse. Her doctor can also order these services as well as Hospice.
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