I try to be patient, understanding and kind, but the irritation gets out of hand too often and I end up screaming at her. She tries to resist me all the time and it's just exhausting. I just feel like a bad person, not worth anything anymore. Who screams at their poor old Mother, I feel so ashamed...
A quandary is my Mother is on Medicaid so I don't really trust State run agencies to care for her. Also she would have to live 30 miles away and I'm still working. She is here alone for part of the day, but I'm monitering everything and it seems to be okay for now. I will retire if I have to to care for her, but I would like to go for one more year. I need to. It's such a losing situation. Also I depend on her small portion of rent to help me pay my Mortgage payment. It isn't much since she didn't work much in her life, but it helps me to take days off to care for her and to rest sometimes. I feel like such a lousy daughter, I try to care for her and show kindness everyday but sometimes I just snap and feel I can't take this situation any more. There is only me, and we moved to an Island about 10 years ago, but we still know no one. I just can't come out of my shell here. We (Mother and I) have always been isolated (it's a long time family dynamic) but now it's even worse now that almost the entire family has passed and the ones who are left are very elderly themselves. Mother does go to a senior Day Care program once a week and that helps. But the unrelenting day after day, week after week, 7 days a week of telling my Mother (she has dementia), every little thing she has to do, all activities of daily living, just everything and then the daily routines have to be repeated verbally at least five times and sometimes more. To try and run her life completely is so stressful for me and so contrary to the relationship we have had with each other. She was always totally independent and hated anyone who intervened in her life. And then there is incontinence both fecal and urine. It's not constant, but I am dealing with her urine and feces everyday and it's depressing. I know it's not logical because she has dementia, but I feel so upset when her package of open pads are right next to her but she just won't put them on if I'm not there right at the moment. And yet at many times in her behavior she seems fairly normal in her reactions. The ups and downs of dementia are continually baffling to deal with. I've been caring for her for thirteen years and It's just driving me bonkers. I feel so depressed I don't talk to anyone anymore. I'm beginning to wish I weren't here anymore. I never felt like she cared much for me, she really neglected me during my childhood and that's a long story, but I always loved her, felt loyal and never wanted to put her in a home, especially a state run one. It's hard to describe, but the constant never-ending caregiving is incredibly difficult. Thanks for reading, it's good to tell someone. Any thoughts or comments would be helpful, Thanks, T.
After reading your letter and all the responses I already feel “not so alone”, knowing others are going through the same thing. The resentment issue bothers me a lot; I don’t want to feel that towards her or my other siblings for ‘not helping enough’. It is what it is’ just doesn’t cut it.
Family caregivers, opposed to hired caregivers, are emotionally invested and we do take ‘aging meanness’ personally and ask ourselves what we did to deserve this. I gave up an income, social and personal life to be abused by my mother?? Well yes, because there was no else.
I am fortunate that I have embraced Buddhism which teaches patience and tolerance but sometimes that just doesn’t work.
Also my mom (age 91) paid into long term caregiver insurance which pays for 35 hours a week of outside help. I did it alone for a year and was totally burned out. She is also on home dialysis that I alone was trained to do (I’ve now trained our caregiver). This has saved my sanity even tho I’m here the other133 hours.
This may sound like a cliche but I have found that meditation helps me cope. Maybe you could take an “gentle yoga” class once a week to learn this calming technique and make yourself a meditation spot somewhere to find a respite (I do it at night when mom goes to bed).
My Mom was a very independent professional all her life (divorced for 40 yrs), well-read, educated and somewhat social. She is stubborn, but worst of all she is negative. She interrupts when I’m talking, argues with almost everything I say and her dementia gets worse every day. She is not proactive about her health so between my sister and I we make the decisions, attend all doctor appts but if mom doesn’t remember something “By God it didn’t happen”
Sometimes I chuckle, sometimes I cry and sometimes I just have to go outside and take some deep breaths.
Good luck to you all in this place in our lives.
With compassion,
a gypsey in Cali
There is no great history here and I would have never thought I could live with mom, but her dementia has actually helped with that. She is not as forceful as she was when she was younger. I am not comfortable with a nursing facility as she fights with people, and will decide that someone is out to get her and I've seen her tell an aide to get out and that she isn't needed even tho at the time, mom needed the aide to get her to the bathroom.
The most difficult for me is when her personality traits that I lived with and resented my whole life come out en force -She will yell at me that dinner isn't any good and why did I buy this crazy house, and I get upset. Do I always come through with compassion? nope - I have yelled at her also and feel horrible about it, but its a work in progress and I am grateful that mom can live with me at this time and have to accept that I'm not perfect and not going to be anytime soon. Also this is not forever. The cutoff for me will be incontinence and my own isolation. So reading your story above I hope you will be able to get out more and do something besides caregiving. Even if volunteers could come in during the week for an hour here or there. If she requires so much that you have no way to lead your own life maybe its just best to put here in a nursing facility. She has had a long life and seems fair that have a life of your own.
I usually don't have time to post answers. A few thoughts immediately came to mind. Lo & behold, when I scrolled the answers, someone had already read my mind: Frances73, who didn't reply directly to you. She is "right on" so please read her post.
I married a man 25 years my senior, who had a stroke 14 years ago, but fell last July and has declined precipitously!
He has needed extensive care since then and I have experienced the same lack of patience, then guilt as you and many others have! So know that you are not alone.
However, I am NOT as isolated as you seem to be. That is not good!
Also, I haven't done it for 13 years. If my husband applies for Medicaid for long-term care, my financial situation as "community spouse" would be impacted drastically. It doesn't seem like that's the case with your Mom. So, it's time to take your life back. You will get used to the commute to the nursing home. Plus, when you get there, you are much more likely to spend quality time with her, as her daily needs will be attended to by staff. As Frances pointed out Medicaid handles payment and their rules must be met. But, the government is not running the facilities (at least for the most part). No institution is perfect and there will be tradeoffs. On Medicare.gov, you can search for ratings of the facilities in your area where your mother may be accepted. At least you will get an idea if it's really awful. It's a place to start, along with local eldersource and other agencies recommended by others.
(If you are worried about your mortgage, take in a border or roommate. Who knows, you might make a well- needed and well-deserved friend too!
Good luck.
I wonder how many more of we good daughters are nearing retirement age and potentially risking our future income and well-being if we do so early. My mothers income alone would qualify her as well for medicaid...and she might do well at a day program...but as soon as you WANT or NEED her to get dressed, you can forget it. She is obstinate and obnoxious. It would create huge stress on all sides. And I also hear you about the nursing homes...so dreadful so often. Even if it relieves some day to day aspects, you and I are of the same ilk that we would be wanting to go daily to check on things. Private hire...the expense is a nightmare and the work quality is, imo, more often awful than not.
In this moment though, I feel like you need to know you have others to connect with because for sure, you are not alone, yet not talking to others you have no idea of that. Are there any support groups in your area? Even an island, I'd guess would be covered by one of the local area agencies on aging and you might want to check in and see if they offer a caregiver support program which would at least temporarily provide you with some outside help and give you a break.
Do not feel guilty and know you have done far more than many would or could.
You aren't alone...
I know you have a trust issue with care facilities but you need to face the facts. What you are experiencing is only the tip of the iceberg where dementia is concerned. What happens when your mother starts: roaming in the middle of the night or while you are away and gets lost in bushland or goes to the water's edge; leaves hotplates and heaters on when you are not around; is thirsty but does not know to get a glass of water; falls and forgets to press her personal alarm - if she has one, or you need lifts to get her up off the floor (these often require 2 people to operate); starts choking on her food either because she has simply forgotten how to shallow; her circadian rhythms change and she sleeps in the day and is up all night; she is continually in tears, or fits of laughter, does not know you and thinks you are an intruder and physically threatens you; thinks you/someone has stolen all her precious possessions; calls the police because she is locked in (some people are known to phone up to 30 times a day); refuses to eat because you are poisoning her, or forgets she has just eaten and accuses you of starving her.........and tucked in among that will be UTIs, pressure sores, any number of infections, not to mention delerium that can last for months.
You both need a decent time-out, so I strongly recommend:
1) you try to get your mother into a facility for Respite care for a fortnight or even a month. This way you both get to see behind the scenes - perhaps it won't be the poor experience you have talked yourself into believing. If your mother is treated well then make arrangements to keep her there permanently if a space is available. If it is, under no circumstances bring her home to pack up her belongings, it won't be so easy to prise her away from her home.
2) you need to talk face to face with people who understand both this dreadful experience and depression in its wider form. IMHO you in a very dark place, and whilst ever you are in that dreadful state you are doing neither yourself nor your mother any favours.
3) As much as you seem to be a very private family I am sure you would benefit from some socialising with your neighbours. A problem shared is a problem halved?
4) Needing your mother's assistance with funding your mortgage is a cop-out. If you cannot manage then sell your place and get something smaller with a mortgage you can cope with alone.
5) Residents in care facilities do not need daily visitors. If you can take the leap of faith and do find somewhere to your satisfaction (nothing will suit your mother, incidentally, even if it was Buckingham Palace) just visit her once a week. You can make a phone call daily to check on her welfare and when she is lucid your mother should be able to speak to you on the phone. But be warned, the time will come when it is not worth the effort - she won't listen, she won't respond, she will speak into the hearing part, she will press buttons, she will be incoherent.
I know this is all a brutal wake-up call but you need it for your own sanity. Eventually your mother will be so confused and befuddled she won't know where she is anyway.
Wearing the hard hat of common sense (instead of the F.O.G. teeshirt supplied by many families of origin).
I want to make a club of *hard hat* wearers.
Good luck.
Hatem Ali
I tried to keep my Father at home. It was a constant struggle. Crazy behaviour from him which I now know was the vascular dementia creeping in.
There was a crisis and he ended up in hospital. This was in 2017. support worker in hospital spoke to me to find out how he was at home.
When I explained and told her what was happening she said she did not know how I had coped for so long. Also discussed care facility with me. I felt awful about it all but got him a care place as I am his POA.
Now I can’t imagine how I would have coped. He’s deteriorated, in denial that anything is wrong, wants home and convinced one day he will.
He has hallucinations and is delusional too. My advice is do something before it all gets unmanageable. Look at care options so when crisis point comes you are prepared. Although we do love them I now detach myself from it all. I do visit. It’s not easy either but his care is no longer my responsibility. I can walk away. I try to go with the flow at visits but never know what I will get. Horrible disease and so unpredictable. Look after yourself and keep posting here when it’s bad. It does help
too struggle with sacrificing my
life for his —- he never had to take care of anyone! Your mom is lucky to have you but who will you have? Make plans to get her care she needs ... more day care? And make time for yourself too!