Follow
Share
Read More
This question has been closed for answers. Ask a New Question.
Hi 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
Helpful Answer (7)
Report

My heart goes out to you, I am going through the same thing with my husband. I too find myself angry and yelling at him. I know it's the LBD that keeps him from being able to respond to certain directions, so I have to repeat & repeat myself, until I finally get frustrated. I spend most of my day praying and asking God to forgive me for all my sins and short comings and to help me be patient and understanding and loving, but then I blow it, again and again. This dementia is such a cruel disease. It also doesn't help matters when you are the only caregiver 24/7, it is all consuming. All we can do is continue to try to do our best for our LO's and be kind to ourselves. Sending prayers and hugs your way.
Helpful Answer (4)
Report

I have recently moved my 91 yr old mother in with me. I have an aide from 7:30 - 2 to guide her through breakfast and am medications and set up her lunch. I work full time and get home by 6 for dinner but mostly she doesn't seem to mind my running out to socialize or shop or go to an AA meeting( which support I depend on).
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.
Helpful Answer (4)
Report
RedVanAnnie Nov 2019
Don't let your mother's rudeness to people keep you from placing her in a care facility if the time comes that you need to do that. Your mother will not be the first crabby resident the staff has had to deal with. Attitudes are part of their day. They may not like it, either, but you are paying for them to listen to your mother's complaints.
(5)
Report
I hope you can see that you deserve a life separate from your Mom. Depression and isolation are killers! Please reach out to your doctor and ask about assisted living nearby or home healthcare ! I feel your pain.
Helpful Answer (2)
Report

Hi there Elizta,
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.
Helpful Answer (6)
Report

There but for the grace of god...I wish I had some answers for you. I can't imagine dealing with what you have for 13 years, alone. My mother and I never had the best of relationships...it at times seemed we would be opposite opinions on virtually everything. Now she is 97 with dementia that, as you mention, leaves her functional in many ways but not in others. I can't imagine the routine daily stresses...and then incontinence on top of it. She doesn't change her undies/clothes. One day a housedress she had slept in and stained badly was tossed down the laundry chute. I debated between scrubbing it for an hour of my time, throwing it out, having to find another to replace it if I did...I compromised, threw it in a load of its own, with hot water and persil and decided to see what happened. Like it never ever happened!
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...
Helpful Answer (3)
Report

I am going to be what might seem brutal to you and some others, but it is meant with kindness and comes from hard-won experience. For your own sanity and in your mother's best interests she needs to go into permanent care.
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.
Helpful Answer (16)
Report
Beatty Nov 2019
Shezza1: Well done.

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.
(5)
Report
See 2 more replies
I think you are speaking-out your mind [,if true to the word], also to think for each of us last/ending period of life is uncertain. Being senior, thinking also for the last period from my seniors-how they passed the last period. Better to make compromise with all situation probable-to manage your mother's ending period reasonable-way of comfort, so that you will earn mental satisfaction for your loved-mother in your remaining period. It is difficult, but manageable for loved one, specifically mother/father.
Good luck.
Hatem Ali
Helpful Answer (1)
Report

It's time for facility living for your mother. You are beyond the breaking point.
Helpful Answer (7)
Report

I am sorry for what you are going through. I do think you need to find a nursing facility for your mom. I do understand it is tough. I went through that a couple of months ago.. My mom is in a nursing care facility and I am glad that she is there. She is 95 years old and has dementia. I do check to make sure she is being taken care of. I do believe even the best facility you have to make sure they are doing their job. I know it is a big decision and it took me awhile to do it. I finally had to openly say it to my sister that this was the best thing for our mom and for us. My mom is there and has adjusted well. I visit her and am an advocate for her. You need to take care of yourself first. I know that you hear that a lot but it seems that is the last thing we do. Please get help. Research resources they are out there. Find someone to talk to and get help. Will keep you in my thoughts and prayers.
Helpful Answer (7)
Report

Elizta
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
Helpful Answer (7)
Report

I'm in the same boat except 2 daycare facilities have kicked her out because she gets frustrated in her dementia & becomes physical with everyone, even the other residents. Regarding your mom, I don't think she should be at home alone. When you said she needs help with every little thing, that worried me. If you can use the senior center while you're at work or errands or a breather, that seems better. Maybe she'll go to bed earlier with this time change too so you can have evenings to yourself. I started beading (bracelets, sun catchers, etc) since she goes to bed just about as soon as it gets dark & it really takes my mind off things. 5mg of time released melatonin helps her sleep a little better, too, through the night. Good luck. I've only been doing this 8 yrs. Do some things for you that give you joy & pray for patience. Patience now is better than guilt later & we have to do unto others. This advice is for me, too.
Helpful Answer (2)
Report
sandwich42plus Dec 2019
If she has dementia, day care is not the right place for care. They are not usually staffed or trained for that level of care as it’s a specialty type of care offered by dementia care programs.
(1)
Report
My heart is with as I certainly understand everything you said. My dad is 92 and I
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!
Helpful Answer (3)
Report

You must arrange respite care. Other people can provide as good care as you can. You must. Caregiver burnout is real and leads to elder abuse nobody ever believed was possible. You have to get out and away for a few days at a time. This forces you to plan your backup in the event you got hurt, sick, or out of commission for any reason. You are going to have to make tradeoffs. It’s going to be just fine.
Helpful Answer (5)
Report

I hear you loud and clear....you love your mother but can't handle the caretaking part of the situation. Please note that not every single person can or should be a caretaker. Not everyone is suited for that. I have a word of advice based on years of experience. Once you find, repeatedly, that you are being very negatively affected, physically and emotionally, then you must stop. You cannot allow anyone to do harm to you - your duty is to look to yourself first. When the impacts and guilt, etc. start to overcome you, then you have no choice - you must place the patient in a facility. it is hard but you can visit and oversee and have a life that you should be allowed to live. If you don't, this will destroy you and I don't think you deserve that. This is YOUR time to live. Parents have had their chance, now it is your time
Helpful Answer (3)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter