I am the fulltime primary caregiver for my mother with vascular dementia and alzheimers as well as severe aphasia other health issues. A year ago, I left my apartment and job and life in NYC to come stay in Mississippi to fulltime caregive for my mother. My siblings do not and will not do hands on caregiving. For awhile, I was angry about their refusal to help, but I accepted that finally. However, they also not only refuse to give me any emotional support or ever even ask me how I am holding up, but they constantly tell me what to do, what I'm not doing correctly in their eyes, what else I should be doing, etc. They act as if they resent me for even being here doing this. It is as if they feel that they would not have to feel guilt for not helping Mom or look bad to the people in her small town for not helping her if none of us were helping her and just left her care to paid caregivers or assisted living but that my doing this does make them look bad. This is already a hard job. Being away from my home or life is hard. Watching Mom progress and lose dignity is hard. As she worsens, the job of caregiving itself becomes more physically and emotionally hard. Losing who I am or even feeling like a human is hard. My sisters constantly backseat driving and criticizing when they won't roll up sleeves to help makes it excruciating. I do not know how much longer I can do this. I feel as if I'm losing my mind daily. I feel so alone. I can't sleep. I cry so many times throughout the day. I feel as if I'm not able to adequately caregive for Mom as I feel more emotionally drained and sad and frustrated. I do not know how to fix this. Life feels hopeless and like I'm in a cage that is hellish.
I hope the connection you have with your mother sustains you and makes it worthwhile to expend your energy caring for her, versus leaving her to paid caregivers or assisted living. In my case, it was what got me through—so many sweet exchanges with her and nods of appreciation, just endlessly rewarding—but that’s only because her life ended shortly before I ran out of gas, so to speak.
People here are giving you good feedback that you seem to be nearing the end of your abilities with things as they are. In my case, I also really felt that hopeless, hellish cage DESPITE how much I loved my mother, so I brought in in-home help—a relief, didn’t solve everything but there were pockets of respite and support I couldn’t have survived without. I also had put in motion the process of sending my mother to a MC (we never moved her in though) when she began her final decline.
Keep doing your best. Read the advice here. These commenters are so smart, even when they give you tough love. You will get through this, however you proceed. You love your mother and want what’s best for her and she would want you to take care of yourself, too. So hard, I know.
I was in a similar situation a few years ago.
My aunt moved out of state and it was expected that I would move down to care for her. Aunt didn't have children, but she has nieces and nephews in the state she moved to.
When I would go visit, one cousin in particular was always criticizing and questioning everything I did. "Why is she wearing that? Did you shower her?" Why, this, why that? Can you come down and help? Can you come take her to her appointments? I mean everything I did was questioned or criticized. I was also spending a lot of my own money like a fool to which this cousin agreed she would go in half with me on and she never did.
If I asked if she could help it was always an excuse. "I have my daughter. I am trying to balance work and family life". As if I am not?
I had enough of all of them. I decided no more and I plain just stopped and now guess who is in charge and doesn't like it? My bossy, critical cousin.
I called cousin and asked how aunt was doing and she told me she ended up getting her home care. However, she only did that when she saw I was no longer the solution and the doormat.
I know this is your mom, which makes it doubly hard, but you need to put yourself first. Let them know you can no longer to this and put yourself first and foremost. Get her in home care and get going with your life. (Hugs) Family are the worst. I understand.
As the desease progresses, things will be harder. You may want to place Mom.
Have you asked your siblings if they would prefer to have mom cared for by paid professional caregivers, or in a care home? Why do you feel you need to be the one to provide all of your mother's care? I understand we feel that we should help our parents as they age, but when she requires more than you can give, it is time to find another solution.
If your siblings are offering "advice", suggest that they go ahead and step in and follow their own advice. They don't get to tell you how to do the job you are doing alone. They can try providing care if they feel they have a better idea.
It is ok to allow mom to be cared for by a paid caregiver. You gave up your life, your job, and if this goes on for years, how much more can you do? You are not preparing for your own future and your old age. It is NOT selfish to give mom the best care from paid providers and to get on with your own life. It is not letting her down. It is giving her what you can not. Because you do care.
Please, you can not continue on in this way. Let your siblings know that mom's needs are now more than you can adequately provide for. Ask your siblings to hire caregivers or to find a nice care home.
Who cares what the people in her small town think? I doubt they really think anything at all about it. They're busy with their own families' challenges.
Tell your sisters that you need to go home, and make a plan with them. If they continue to complain and criticize, go ahead and make the plan on your own.
I finally realized that I had reached the end of the road with my sister, and had her placed in a group home. She actually improved since she had to re-learn simple life skills like toileting and feeding herself again. When I moved, I told my dad I was leaving in two weeks and gave him a list of things to complete. I told him that I was moving out. We completed the placement process and he went on with his life, and I went on with mine. Dad tried to pass his guilt on to me, but I wasn't buying it. I was done. I did the majority of the heavy lifting for three years. In those three years, I was allowed to work at least. There were no outside activities other than church. I was saddled down while the family took exotic vacations, camping trips and etc.
Sometimes, you just come to a fork in the road, and you are forced to make a decision. For me, it was financial.
Dementia doesn't get better. It's a progressive illness.
I agree with the others here to get a part-time job to at least earn some income for yourself.
Your family shouldn't insist on your doing the job that they won't. Professional caregivers in a facility can give mom a safe, caring life, and there is no shame in admitting you can't. Instead, congratulate yourself when you find exactly the right place for mom, and be grateful that you can give her that level of care. Professional care can be much better than the care that a frazzled worn-out family member can provide. I'm a family caregiver X 4, and I know.
As to their criticisms, what would happen if you said you could really use a monthlong vacation and they are welcome to cover for you yo try out their own suggestions on how it should be done.
You didn’t get into who has DPOA for your mom, and health care proxy. If it one of your sisters, that might make it a bit more complicated to place her. You also don’t mention whether your mom/ her estate is paying you to care for her. Whether she has a house that can be sold for her care or whether she is on Medicare/ Medicaid.
good luck! I hope you escape from the hellish cage soon.
And set boundaries with your sibs, when they start on the "shoulda coulda woulda" firmly tell them their comments aren't welcome or helpful.