I took care of my Mother for many years, the last eleven being especially difficult as I was working while taking care of her in my home. She has thrived very well at home, however due to her dementia worsening I had to quit my job when the pandemic started to care for her full time as I couldn't take the chance of placement during the pandemic.
Gradually over the years I feel like the life has been slowly sucked out of me going into her. Giving her my energy gives her life. I have managed throughout the years, but recently at 65 I feel like it's taking away my health in a bad way. She was thriving bright eyed and bushy tailed while I've been slowly drained, becoming exhausted with everything.
Over time I developed compassion fatigue but dutifully kept at her care, not wanting to put her in a Nursing Home for fear she wouldn't be properly taken care of. Our family are all gone now, I'm left to help her.
Recently on the 20th of this month she had a stroke and is currently in a rehab center. I can only visit her 40 minutes a day and can't participate in her care or see her room as family are not allowed into the nursing home. Due to an error in scheduling I didn't see Mother for four days (they didn't put my name in the schedule book as promised). My worst fears about nursing homes are true. When I saw her she was dirty, hungry, thirsty and had generally gone down hill. The day before I came in she slid out of her wheelchair and fell to the ground hitting her head, because they couldn't be bothered to put on leg rests, even though I pleaded and insisted they do so at a previous visit. Some of the staff seem incompetent, indifferent, and lazy.
Yet if I bring her home and give my life for hers she will thrive but I may not. If I leave her in a nursing home she won't thrive and probably will die, then I live with that for the rest of my life.
It is a terrible time to go into a nursing home because you can't monitor the care properly because they won't let you in. Yet, I'm so burned out with caregiving that even hiring a part time aid to help me sounds overwhelming. I tried contacting small Adult Family Homes, but the good ones are full, Mother is on Medicaid and VA and we live on an Island which further complicates things. I'm wondering what options are left? I don't think I can handle any of the ones I mentioned (putting her in a NH or bringing her home). I guess I'll have to bring her home, but emotionally I'm at my wits end, I don't know if I can stand to continue on with her all consuming care. Feeling alone and in despair.

Find Care & Housing
Life can really suck sometimes. Big big (((hugs))).

Wondering if there other choices between your home care at one end & THAT nursing home at the other?

Would care in your home be possible again IF there was a lot more home help for you? Eg Aides for bathing, care & company? BUT it would mean being Manager of your own little care home.. problems when staff don't show/are late/under skilled would be yours to manage. Plus lack of privacy for yourself. I wouldn't recommend this option as it would still take enormous effort on your part - for not much more freedom than before. But just an idea.

Would an assisted living work? Would this have enough care for her? If not, could this be added with extra (paid) Aides? Is there finances/funding for that?

If home can't work & assisted living won't work that does seem to leave the nursing home option 🙁

Are there other nursing homes near you? Would THAT nursing home be made acceptable if extra Aides could be added/funded?

Would a different NH be acceptable, even if 1 hour travel from you? Or even 2 hours?

PS Could she be eligible for Memory Care? (People seem to be happier with this type of care).
Helpful Answer (1)
Reply to Beatty

I am terribly sorry about this unfortunate incident.

My mother’s doctor has always said that hitting her head during a fall always requires a hospital visit. You have every right to be upset.

If this happened to your mom, it most likely has happened before and will probably happen again so for your mom’s sake and others, please take this up with the social worker at the facility. Plan a meeting, ask that all necessary parties are present at the meeting. Ask questions. Listen carefully at answers. Take notes. Make decisions about what your next steps should be.

Wishing you all the best.
Helpful Answer (1)
Reply to NeedHelpWithMom

Can you call hospice and ask for a meeting? If you can, then they can help oversee her care just a bit and it should help. You could also install a camera in the room and they will at least not do anything overt.

My dad had a TBI (hematoma) from a rather benign fall and became more demented afterwards so falls at that age should be taken to the hospital for a CT scan. We took him to the doctor, we took him to the cardiologist (thinking his heart was getting weaker) we never thought to take him to the hospital for a CT scan.. because there was no evidence he hit his head. But it doesn't take a direct hit when the blood vessels are old, they can just spontaneouly bleed from just being jarred. Anyway, my point is that I just put him on hospice (for dementia and failure to thrive as his rehab didn't go that well). He's not on hospice for his heart or lungs technically. But hospice at the memory care facililty seems to be better than a nursing home as I really don't want IV's and blood work pokes etc for him anymore. Hospice so far has helped quite a bit AND because he's on hospice I am allowed in 24x7 as much as I want to be .
Helpful Answer (0)
Reply to marydys

I just contacted Alliance For Better Long Term Caregiving & they contacted the care facility immediately. I was able to see my mom the following week.

My situation is different than yours but they are a great advocate for patients & their families. My only wish is that I had contacted them sooner.
Helpful Answer (2)
Reply to Jada824

Thank you everyone for your suggestions. And thank you AlvaDeer for your response, reality has hit home. Thanks again
Helpful Answer (1)
Reply to Elizta

You need to report this NH and have her transferred. Hitting her head means immediate transportation to the hospital.

Just saw u live on an island. You have a right to call an ambulance for Mom and have her checked out. The only thing is the NH may not allow her back. But the hospital will have a record of neglect.
Helpful Answer (1)
Reply to JoAnn29

Not everything has a "fix it" solution. You are clearly aware of that now. You have tried everything you an do. Continue to explore other care facilities if you like, but I caution you not to bring her back into your home. You are clear in your mind that this sacrifice will harm you; indeed we have seen caregivers get life threatening diseases, wondering if it has killed them. You have one life to live. It sounds cruel but your Mom has had her life, and your attempt to continue care when you know you simply cannot anymore could have dire consequences. Please accept your limitations and do the best you can now with the options left to you, but do not attempt to do in home care. I am certain that somewhere in your mind you tell yourself you should continue this care because of your Mom's care; but today with good care people live to 100 and more. We have already had the discussion many times on Forum of "Do we Live Too Long Today". And of course there is any number of variations in opinion on it. But you are speaking now about your own one-and-only life upon this earth. Please do what you can and accept that you are human, not Saint. I wish you good luck, and an so sorry.
Helpful Answer (5)
Reply to AlvaDeer

Thank you for the suggestion about the care meeting, very helpful, thank you.
Helpful Answer (1)
Reply to Elizta
BarbBrooklyn May 10, 2021
If they don't schedule it, or keep putting it off, contact the ombudsman.

If they tell you that your mom is in the state she is in because she is refusing baths, chsnges, ask them how you all can work as a team to get mom to ccoperate.

What worked with my mom was "now it's time to..." rather than " do you want to...?".

Also, if mom is agitated by bathing, consider the usefulnrss of a small dose of anti-anxiety meds before bathing.
I know this may be cost prohibitive and is not the ideal but there may be a work around that can get sympathetic eyes inside the facility, in some places it is possible for families to hire outside agencies to provide extra care.
Helpful Answer (0)
Reply to cwillie

Start by scheduling a care meeting. Come with a list of your observations about your mother's care and condition.

Inform politely that you will be in contact with Ombudsman and the Joint Commission on Nursing Home Care in your state to document their neglect.
Helpful Answer (4)
Reply to BarbBrooklyn

Ask a Question
Subscribe to
Our Newsletter