She’s very fussy, very tidy and organized. I keep a very neat and clean house but she is way overboard, drove me crazy with constant questions, has lost her sense of humor and basically personality-wise is very incompatible with me. Bottom line is if I had to do this full time, I’d go crazy. I’m no slouch, I took care of my mother-in-law for 15 years and my sister-in-law for two years in my home while she was dying and on hospice. I also went through a very serious illness myself at the same time and was exhausted. I feel bad for my sister being my mothers full-time caregiver but I am over that and don’t want to do it again. I’m tired of the same questions and the same stories over and over and over again. I cut her off and tell her I don’t want to discuss it but she argues with me like a little kid and over the dumbest things.
I found myself not wanting to talk to her so ....I invited friends to my home hoping to engage her in conversation, but she can’t follow conversations anymore so she prefers to isolate herself by retreating out of the room. She really doesn’t want to be around anyone other than me and my husband. She has moderate to advancing more severe dementia and is easily agitated which makes living with her very hard but the finances are not there for her to go to assisted-living and she doesn’t want to either. I just feel so guilty that my sister has to do this and has been doing this for more than five years now. I help her out from time to time but I live 3000 miles away which means transporting mom to and from. This is starting to get really hard on my mother and I know that soon she won’t be able to at all.
It's really getting to my sister but she has lots of buffers, Grown children and grandchildren around to break up the monotony. I do not. My mom is like the visitor who stays too long at your house and when they leave you were so relieved. I pray all the time for patience and kindness, but our personalities really clash, we are very very different people!
I would like to hear your comments because I am feeling very guilty and I am now extremely depressed that I might have to return to the job of caregiving.
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Your sister does surely need respite breaks, but that doesn't have to mean your mother in your house for ten weeks at a time. How far away do you live from one another? Are there any good facilities that you can both easily get to that could offer respite care?
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And don't let his (possible) plea that "Mama can't go into a facility!" drown out any voices of reason that insist a change must be made. Has he stepped up at all? Where does he live?
Do you have any idea what your sister's thoughts are a facility for your mother? She should be the one most amenable, since she does the most. But is she?
I see we will have to have a discussion which includes my brother. He has 2 teens at home still but he’s also responsible .... we need to find a way.
You are brave and honest to acknowledge your feeling and enumerate the reasons for your feelings. “Feelings” can be excellent servants but poor masters. You are considering the feelings of your sister and yourself.
I am seeing a question mark in one statement about your sister. You may be thinking that your sister’s grown children and grandchildren represent an asset to your mom’s care. That may or may not be so. Only your sister can really address that.
Whether your mother does or does not “want” to enter residential care is really not a luxury decision for any of you. If she needs residential care, and you list multiple reasons why that seems to be so, then your question, when “guilt” is omitted, is “How can we provide the 24/7/365 care that our mother needs?”
Another question to consider is this simple- “How can we develop the best plan to keep our mother safe, comfortable, and as peaceful as her condition can allow her to be?”
Another observation, based on what you’ve said, and a question. From what you’ve written, it appears that you have some conflicts in your reactions to her symptomatic dementia related behaviors. Does she have a formal physician generated diagnosis of dementia? If so, her comments on your housekeeping are meaningless, and your job is to recognize them as such.
You are correct that she has “lost” her sense of humor, BUT- she has also lost ALL the nuances of thinking and interacting related to cognitive functioning. I think you may feel a little less frustrated by acknowledging that as well.
You and your sister may need to reframe your expectations for your mother’s care ASAP, with objectivity, mutual appreciation, and acceptance.
If residential care emerges as the best option for the three lives most involved, it needs to be considered right now, and the conversation must be addressed without guilt.
You have both, as caregivers, done all you could. Time to investigate financial options and do what is best for all concerned.
There are no “good” solutions in a caregiver’s decision making. Good caregivers learn to make the best of the less than good decisions by which they are confronted.
Hoping you find peace and success in your efforts!
40% of dementia caregivers die before their elder. How will you feel when/if your sister dies from the stress?
"Its really getting to my sister but she has lots of buffers, Grown children and grandchildren around to break up the monotony. I do not."
Buffers or not, the responsibility on your sister is tremendous. What happens when/if your mother starts getting up in the middle of the night/can no longer use a toilet/etc.? The grown children and grandchildren aren't going to be around to help then.
I am not trying to make you feel guilty. NEITHER of you should be taking care of your mother. So what if your mother doesn't want to go to a facility? She's greatly affecting your sister's life (and yours, when she lives with you). You are right in that it's not a good idea to continue moving your mother back and forth.
Who is the POA? HCPOA? Will she qualify for Medicaid?
Your sister will continue to need respite from caregiving. Start now to explore your options. You know you can’t do it, but you need to help her find someone or someplace who can if a LTC facility is not an option.
Again, please don’t feel guilty. It’s not you, it’s the situation.