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My mother is 89 years old and has Alzheimer’s. I have been taking care of her for ten years now in my home. There are no brothers or sisters to share the burden with and we have no assets to pay for help with caregiving. So it’s all on me. My son is 24 he also lives with me and we are all in a 2 bedroom apartment, She is constantly barging into my sons bedroom and interrupting him from homework, from speaking on the phone, when showering. We had to put a lock on his bedroom door. She then bangs on the door and yells for him to open. I’m between a rock and hard place. For ten years she has had a very detrimental effect on my autistic son. The stress has caused me two strokes and pre-diabetes. She wakes me up several times a night switching my lights on and speaking to me. So I’m constantly exhausted. I can’t concentrate to do important things like pay bills or run errands because I always have her attached to my hip. She was a good woman. I don’t fully agree with the view that they cared for us , now we must sacrifice our lives and those of our children to care for them. She had a great life 90 years of it. She is destroying ours and leading to stress related health issues. I feel she will bury me because she is completely healthy nothing wrong with her. It could be another ten years, I have paid my dues. I would never never want to be a burden to my own child. So why do I feel guilty about putting her in memory care. In this country it sucks, it costs more than 99 % of normal people can afford. It would ruin me financially and leave nothing for my autistic son when I die. Memory care is a euphemism for glorified incarceration with short staffing almost no outdoor time and lockdown. I have visited many places and they are depressing. I have considered this statement very carefully, I would rather be dead than “live” in that state of existence, yelling, or in a stupor and subjecting my loved ones to anguish. In Denmark they have Alzheimer’s villages where these folks are treated humanely and there are more caregivers than patients. That will never happen here because it’s all about the “ The almighty god of profit “ People are now living much much longer and a huge burden for the ‘sandwich’ generation who are also taking care of their children. We worked hard our whole lives for whatever years we have in retirement but I feel my life is being destroyed by my mothers illness and by extension by her. My doctors say that my serious health issues are partly caused by all the stress. The panaceas of ‘take time to yourself, take a break ind help’, etc are not possible if you have no money and no family. For her sake and mine I think she would spare herself suffering, give my son a better life and allow me to live out the rest of my days in peace if she were to pass sooner than later, she is depressed and miserable most of the time pleading for god to take her. I have battled with clinical depression because that IS depressing ! So why am I feeling guilty about putting her in memory care ? She moans and groans constantly asks the same questions 100 times a day and follows me like she’s glued to me even in the house. The most patient and loving human being would crack under such torture and I do not mince my words it IS torture. Because she was a good mother. Because she still recognizes us. Because she likes to be in our home. Because she would suffer and that is a plain fact if placed among strangers and locked up in doors 99 % of the time. What do you think ??

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Try changing the word guilt to grief and you will understand what it is you are really feeling.
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I don't know why you feel guilty.

Did YOU do something to cause your mother to develop dementia?

Maybe you feel grief that she is old, sick and that trying to take care of her is killing you.

YOU and I would rather be dead than be in memory care...because WE don't have dementia. Your mother may feel more secure in a smaller, more predictable place with a schedule and no surprises.

I believe, ardently, that we pay our parents back by taking good care of our children and making the future better for them.

You mother's resources (including Medicaid) should pay for her care, not you.

Protect your son. That's your job here.
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You are absolutely correct that you are bearing a terrible burden. You’re absolutely wrong that all memory care places are awful. Please visit some and see that there are great ones, good ones and few bad ones. Remove your whole family from this nightmare you’re living by finding a place where she can socialize, enjoy life and be cared for by people who are trained to do that.
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Moving to Denmark is not possible so find the best alternative you can.
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What I think is you're doing yourself, your son, and your mother a grave disservice by cramping everyone up in a 2 bedroom apartment because you have some preconceived notion about Memory Care Assisted Living being some house of horrors and feel such "guilt" about placing her.

My mother lived in one of these "locked down glorified incarceration " places and not only was she treated humanely, but like a well loved family member by the entire staff who doted on her day and night. I can't say enough about how beautifully she was cared for during her nearly 3 year stay there, so your statements are off base entirely.

If your mother can't afford to self pay in Memory Care Assisted Living, then you can apply for Medicaid to fund her stay in long term care. Your prime concern needs to be your autistic son and not a 90 year old mother who WILL be cared for in managed care. You can go visit her every day, multiple times, if you so desire. But to prevent your immediate family from having any privacy bc of mom with AD is wrong.

Stop dramatizing this situation and fix it, for all of your sakes. Your mom will likely make friends in managed care and have a more social life there than she does now!
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LoopyLoo Dec 2022
THIS! Read and heed!
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Both memory care and nursing homes can be a real culture shock to anyone who has no experience with them, even the poshest of them are chock full of people with dementia who may act inappropriately, or frail, disabled and sickly people. Because I hit the wall when caring for my mom she ended up in emergency respite bed at a less than posh nursing home until a bed became available closer to my home... that was a real learning curve and made the shortcomings of the second home much more tolerable. But it's all about learning to let go of the tight control you have over her life and settling into the rhythms and routines, of course there will be problems but there will be many positives too, not just for you but also for her.
Why would she be "locked up in doors 99 % of the time", most places have outdoor space that you will be able to access with her. She will have the opportunity to meet new people and to join in activities.
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lealonnie1 Dec 2022
Not to mention, elders with AD and dementia don't even realize the doors are locked to prevent them from wandering off! Mom's place had a bookcase mural on the exterior door so unless you KNEW it was a door to the outside, it was just a door that looked like a wall of books. The residents had their own exterior doors to go outside into the garden and patio they had full access to.
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Radapanich100, this isn't the olden times where there was sorry state of existence, yelling, or in a stupor in a county asylum. Those days are long gone. Senior living has changed quite a bit. Newer facilities resemble a hotel.

My Dad lived in Memory Care and was happy as a clam being there. He felt safe, loved the restaurant style dinning room, and being around people from his own age group. As for lock down, hey no different than you and I locking our front and back doors during the day/night.

You mentioned your Mom doesn't have any assets, thus you can apply to your State Medicaid office for placement of your Mom in a Nursing Home. Medicaid will pay for everything, it is taxpayer funded. There are really nice nursing homes, my Mom had resided in one during her final months as it was too difficult to care for her at home. I felt zero guilt, as I knew she was in good hands :)
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"a plain fact if placed among strangers.."

I think we are placed amount strangers all our lives.

From kindergarten, to our school class, to the workforce.

Some stay 'strangers', some acquaintances, some become dear friends.

Who has the fear of strangers? Your Mom? Or yourself?

".. and locked up in doors 99% of the time".

I like some outdoor time but my Mother seems to dislike all wind, sun, rain.

Does your Mom actually like to be outdoors?



 
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Radapanich,

Lawdy, it is time for you to have her placed, long past, it seems.

By contacting your local or state services for the aged, you can get to work on having her qualified for Medicaid and placed in a MC unit or SNF that will provide 24/7 care. You can then begin to recover from the past 10 years and focus on your son and on regaining your health.

It is a statistical fact that 40% of caregivers die before the person that they are caring for; you are headed in that direction and absolutely must pull yourself back from the brink. You still face the years ahead of caring for your son and he needs you for developing his own life skills. You are human, a very kind and selfless man and it's time to wave the white flag of surrender.

Please, contact the agencies after this weekend passes and start the decision making process of choosing a facility and getting her qualified for care. She will fight and don everything to make you feel guilty and rotten, but her brain is broken and you cannot reason with her or present your case to her; you must do this despite her resistance. It is best for everyone and you can no longer be the axis upon which both your mom and your son's lives revolve.

My 88 yr old mom is in MC and doing as well as can be expected, she has developed some meaningful relationships with a couple of the staff people there and I live 90 miles distant. My daughter and 2 grandkids live with me and there is no way that I'd subject any of us to the whims of her broken brain.

You need to end this exhausting way of living your selfless life. Give yourself permission to live and allow your son a more normal life. You have more than done enough of sacrificing yourself for mom.

I wish you well in getting your mom placed as rapidly as is possible. No second guessing and no going back. You may even find that she enjoys the new freedoms of living in a group setting. Anticipate that her cognition will be impacted for at least 3-5 months while adjusting to the new environment.

Move forward without guilt and with knowing that you have done far more than your duty as her son.

Stay strong and recover your health.

*Hugs*
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It sounds to me like you were lookng for all the reasons not to put her in memory care, so you found them.

Yes, MC is locked, just like you've locked your son's door. What's the difference being locked in vs. locked out? No MC keeps people inside 99% of the time. My mother's place had all of them outside every morning for at least an hour, and anyone could go outside anytime they wanted, as the yard was gated.

She'll be safe, she'll have people watching out for her needs 24/7, and you'll be freed up just to love on her. I suggest you look at other memory care facilities or tour the others again with a brighter frame of mind.
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You have nothing at all to feel guilty about. You have done more than your share. You are most certainly overwhelmed. You deserve to live in peace.

Please know that you are helping your mom in the absolute best way possible by placing her.

You are basing your feelings on what you are used to. You are used to having your mom near you. It can be difficult to let go. It’s fear of the unknown. Give yourself time to adjust to her being cared for by others.

Your mom will adjust to her new environment. You will be her daughter again instead of her full time caregiver.

You will be free from the responsibility of the day to day work and can focus on your son and yourself.

As time goes by and you have had enough time to process what you have been through in the past, you will wonder why you haven’t placed your mother sooner.

One person can never do the job of an entire staff. Trust me I know. I tried to do everything for my mom too. When I saw the care that she received in a hospice home as she neared the end of her life, I regretted that she had not been placed sooner.

Wishing you peace as you continue to move forward.
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