Rock and hard place. Can't afford 24-hr care at home and a nursing home is the only other option with Medicaid. I'm ridden with guilt. Help!

Coop, welcome!

Here's the thing. RIGHT NOW, the situation is that your mom needs full time care and that means a nursing home.

If something is able to be improved, reversed, down the road and her needs change, you get her what she needs THEN.

Perhaps it is grief you are feeling. Guilt implies you've done something wrong. You haven't.

Fractures in elders can cause delerium. Fractures in elderly can often also seem to move any cognitive decline (if present) a few steps worse. UTI can cause delerium. Unfamiliar surrounds can cause falls.

Sorry to be such a downer.

Was any reason found for the initial fall?

It can take much time to see if the delerium lifts, or this is indeed the new normal. Wait & hope.

The rock & a hard place: Yes, I see just the one option available to you. The one you are doing.

Fractures can be game-changers. All I can add is stay hopeful, but be realistic. You have not 'blown up' your Mom's life. Old age did.

Well I guess you are blowing up her life .... but her heath problems and lack of ability are causing you to have to make that decision. Even if he would afford 24 hour care...that doesn't mean it would be the best or most consistent. What happens if somebody flakes out on a shift? He has his own significant health problems right now that need serious attention and focus.

True story. Back in the day, my MIL needed assisted living and the husband picked a very nice religious private pay facility for her. Somehow she ended up with a Foley catheter which resulted in several UTIs. It would take them a lot of time to get a doctor to order a urine sample to get the results back to getting her a prescription. After a hospitalization of a UTI, the facility decided that she needed to go into the skilled side and did not qualify for assisted living any longer. We moved her to a very small basic facility that did accept medicaid etc, And they did an absolutely WONDERFUL job. They would check the bag and would do a quick dip test if it looked suspicious...and she would be on antibiotics within a couple of hours.

Moral of the story....an expensive private pay facility may not be as good as a rate one.

Regardless....your mother and her boyfriend each need time to get well and placing her in skilled nursing of some sort until she can regain her strength will be best for her and them as a couple.

It doesn't have to be permanent. We couldn't take advantage of the Medicaid-at-Home program for my dad because home dialysis was in its early stages back then. Maybe it will work for you as a long-term solution while the nursing home serves as a short-term solution.

You're doing what you can with the resources available. That's good caregiving.

hey coop
youre not blowing up your mums life - this situ has. I’ve been in a similar situ re UTIs delirium and a long stay in rehab with my lovely dad
we can do our best but we’re not professionals and hearing your mums needs give it a go. If your mum boyfriend has his own stuff going on and a carer even being there all the time you can’t guarantee needs will be met.
its hard I know. If our loved ones are in hospital getting the care they need we’re ok with it, the minute we say the words “home” or “care” it feels different but it is still about giving our loved ones the best care they can have to bring them to the best place for them.
My dad came home for hospital after 10 weeks 7 days ago; he’s slept the last 3 days 20 hours a day; has already been in A&E for a fall and I feel like shite about the whole situ, our social worker has said he needs respite now because she’s not happy with the situ and my 82 year old mum is falling apart with the care she needs to give him. I’ve been staying now till we can get him in respite, We have carers in 4 times a day. If you are being offered a nursing home take it, it’s best for your mums care and further rehab. I am wondering if my dad has dementia or has had a stroke and it’s been missed
good luck with it xxxx

I'm so sorry that you're in this distressing situation. My MIL is in a wonderful LTC facility on Medicaid (she even has a private room, which is unusual). She is not mobile. She was getting many UTIs even though she had no catheter and her hygiene care there was very good. Sometimes UTIs are caused by changes in a woman's physiology and so her bladder can no longer empty completely. When she was clear of her infection we started her on a maintenance supplement called D-Mannose. You can look that up here on this forum or online to see if this is something that may help your mom. It greatly reduced the number of UTIs my MIL was getting.

Regarding her cognitive/memory issue... did she have anesthesia for her sacroplasty? You don't mention your mom's age but some anesthesias are not good for seniors and cause a fog afterward that takes a while to go away, and sometimes never goes away (my friend's dad had permanent impairment after shoulder surgery and he was in his mid 70s).

There are other health issues that can cause dementia-like symptoms, including thyroid problems, diabetes, cardiac problems, etc. Please make sure these are all discounted as causes. Wishing you peace in your heart as you work to help your mom!

Speaking from experience my husband has UTI's all the time sometimes he knows it and sometimes he doesn't. The urologist found out that there was a pocket in his bladder that doesn't empty all the way and also found out that taking a maintenance antibiotic at night helps this problem because he isn't up as much and it pools in that pocket creating bacteria.

Maybe going to a urologist having them do a scope up the bladder may help her with her UTI's also maybe putting her on a maintenance antibiotic and taking it at night might help her too.

Prayers that you find out what is wrong with her.

Everyones answer has been so supportive. I am so grateful for every person who replies as
l have gone through much of this with my husband who has Parkinson’s and could not care for him after my own surgeries left me needing care and rest (which the family shared) but after husband’s falls (one with an assessment carer still sleeping), he is now with my son who has two carers and a physio coming in weekly. He is walking and feeding himself now but not able to do much else. Even by sending him somewhere where he will still not recover more of his facilities l have my own worries as no one realizes l have now to worry about where carers would come from if ever needed by me. The money will not be there for anyone at the pace it is going. Yet he and other family members do not want him to go into a care home. I also did not but after experiencing some months at my son’s with a bad carer l do feel it is better that he can be more properly cared for in a well supervised atmosphere. At present there is little l can do to change anything iright noe. And the future is an unknownthe. We are all managing but there is the not so far distant future that is on our minds.
Did l say my son and husband are in another and distant country with my son’s new wife of three years. Although they are so very caring they have a very sociable life. All my children and family are working so l do not know how long this arrangement would be possible. Personally l would not want to be such a burden on my family who travel to see him and each other. He is nearer to his brother and sister and their families and they often visit him which is good for him. I am blessed they all value family so much. I can only say we can do what is best for now and to reach out as you have done again when needed. Thanks to you l am able to speak of my personal experience.

If your mom still has an infection, that will need to be cleared before thinking about a nursing home. Work with her medical doctor to make sure her UTI is treated with the right antibiotic and she gets that cleared up. Infections can cause a lot of the symptoms of dementia. Also have her tested for COVID too.

If she truly does have neurological decline, then help her to get the care that she can afford. Her boyfriend may be a candidate to join her at her new facility.

One way to get rid of UTIs is to take Cipro 250 mg on Monday , Wednesday and Friday. That keeps UTIs away. I have to self-cath and my doc and I discovered this little formula.

I understand and can relate. In time, I think you will find the nursing home to be a blessing. I hope you will find comfort (or at least feel less guilt) as you process that your mom didn’t have a choice. She has been evaluated by many professionals and the evaluation says nursing home.

It sounds like the may be a harder adjustment for her partner as he loves/needs her too. I imagine your mom already knows this is happening and is working towards acceptance. It’s not ideal but it doesn’t sound like there are any other safe alternatives. In this case, perhaps the only choice is the best choice.

I'm glad to see the supplement D-Mannose has been mentioned in prior comments. It works both as a UTI prevention and can even eliminate an infection in some cases. You can get it on Amazon, and give it to your Mom regularly. Make sure she drinks plenty of water, something the elderly doesn't like to do but is crucial.
It's very disorienting to be in a hospital, then rehab. The elderly do not take to these environments well. Your Mom has been through a lot so don't give up - it can take months before she gets back to herself. My 93 year old MIL suffered a stroke, then Covid, lost mobility and couldn't eat - was put on hospice - fast forward - she is now back to herself in a nursing home. The important thing is that you advocate for her, get 2nd opinions, make sure she is getting the proper rehab, and keep her mood up.
When all is said and done, if she must be in a NH, find the best one you can, one that values the patient and their families. You must be able to visit frequently so that you can assess her care and be her advocate. The most important thing is that she feels cared for, safe and comfortable, wherever she is.

What type of drugs did rehab have her on. My mom was in a rehab in 2015. She had bad knees. They put her on some heavy drugs. She stopped reading was a completely different person (8week rehab) when we brought her home we stopped at her doctors. She took mom off of the strong drugs and we got my mom back. Home Physical Therapy had her walking again quickly.

This is heartbreaking and happens to so many. First of all, your mother is showing signs of both physical and dementia problems which comes with aging. You CANNOT TAKE CARE OF PEOPLE like this - it is just too much. And it will eventually harm and destroy you. When people have these problems, the best place they can be is in a facility. They will never be what or who they were and nothing you do can change that. YOU must take care of you and you can still love her and look after her from a distance. Never, ever feel guilty - YOU DID NOT CAUSE THIS. You have no reason to feel guilty - you are doing as much as you can.

It was sooo hard to recognize we had to place my brother in assisted living after his first brain surgery. I reminded him of how he couldn’t remember to take his meds, but that he’d have meals provided, etc. He was very upset but he trusted me. Now he’s in hospice in an excellent nursing home. My overarching goal has always been to keep him safe and comfortable, if not happy. That’s helped me make decisions without looking back. His young daughter and I simply can’t find provide the care he needs. There’s a reason for shifts for nurses in facilities. It’s so they get rest. You wouldn’t if you took care of her at home. That’s when accidents happen. The doctors aren’t on a lark when they say she needs to be in a nursing facility. You’re still absorbing how ill and frail she is so that’s making things harder for you at this time.

Your job is to find the best one around. The Medicare website has ratings of nursing homes. Look for overall score, 4/5 at least, and resident care with the same scores. The closest one may not be the best one. Finding the best one around will give you more peace of mind. Not all of them are dumps. Medicaid beds are limited because facilities don’t make as much money from them. But they are there. Select facilities for the hospital social worker to contact to save yourself the hassle. Good luck!

The Medicaid application takes months. Best you start as soon as possible. If she is approved she doesn't have to use it. Better to have it and not need it than to need it and not have it.

Is it absolutely necessary that your mom be on Remeron? I've seen that drug given to many elderly people both in facility and in the homecare setting. Every one of the elders I saw who were on it lost whatever mobility they had and were permanently confined to wheelchairs.
I truly think that you should eliminate the Psych from your mother's care. If they aren't allowed to diagnose dementia they really shouldn't be doing the testing for it. I've known way too many elders that psych was brought in for. Of course they were put on unnecessary "meds" by these people. It totally destroyed them and any independence they still possessed. Then there is no choice but a nursing home because the elder cannot improve or even get back to what they were before they were given psychiatric meds.
Please tell psych to go pound sand and deal with neurology only. If your mother is still sound enough to know there's something wrong with her physically, then her mind isn't so far gone yet.

If her boyfriend is facing a blood cancer that requires allogenic stem-cell treatment, he'll have to hire 24/7 for himself for at least three months or find a facility that can care for profoundly immunocompromised individuals. If they're talking allo-SCT, this cancer has been around for a while. No way a person this sick can take care of another.

Psychiatric medications can mimic neuro symptoms. If she was never depressed before, what was observed to put her on Remeron? She also on Seroquel? Maybe the withdrawal of said medications would improve her gait and rehab process while clearing things up by the neuro consult. Worth having a talk with the DON about?

I can’t comment on the drugs, but can remind you that many of our elders die following something unexpected going wrong. My sister right now is (thank heavens) recovering from viral pneumonia that took 8 weeks to diagnose, and took her to the only local hospital that currently accepts lung issues because of Covid, no visitors etc etc. Her problems were totally unexpected, and could easily have been fatal. No-one was guilty of anything!

Make the best choices you can for her care, and for her partner’s care (if that is your business). Set them up with Zoom technology if it’s possible. Give BF a stack of cards with stamped addressed envelopes so that she can get the pleasure of opening something from him every day or two – and cards for her to send as well. If they can add a kiss, the staff will post them. It will give M and BF something to talk about in phone calls, whether it’s pretties or funnies or outrageous jokes. Don’t worry about the future or the past, just make the present as pleasant as you can, for yourself as well as M and BF. Love, Margaret

CoopHeath: Welcome! Your mother requires help now and the rehab has stated a nursing home is the option currently. In addition, you stated that your mother was checked in the hospital for a possible stroke for a BLEED. Was she checked for a ischemic stroke due to a BLOOD CLOT? My late mother suffered an ischemic stroke. Easier said than done, do not be ridden with guilt as it will deplete your physical and emotional stamina.

I am missing something here. Where is you mom at this time?
Is she in rehab or (already) in a nursing home?

I understand. I am in a very similar situation w an 88 yr old friend (of 20 years). I am his POA. He has no one else.

There comes a time, even if temporary, when a person needs to be wherever is best for her safety and welfare, and health.

I may not be the best or even minimal person to respond as I do not know what a 21 on dementia test is and I do not know what you mean 'she doesn't diagnose' - does this mean she doesn't fit the chart or criteria of having dementia ?

As your mom seems to understand / feel there is something neurologically wrong, is she wanting / pleading to go home or are you talking about how you feel about her not being home / and the sadness you feel of her being in an unfamiliar place? You want the best possible care for her, even if it feels sad due to the changes she is going through and her environment. As our aging loved ones go through this time in their life and the accompanying physical and mental declining changes, we want them to be as comfortable as possible. Sometimes, unfortunately, finances do get in the way of being able to create the space/comfort we want (= no $ for 24/7 care, as is the situation with my friend in Sec 8 housing). It is a cruel reality - I know working with elders that some families 'easily' spend over $10,000 a month for care. And this could go on for a while, if not a year or longer.

I hope that you are able to realize that you are doing the best you can in a very sad and difficult situation. Seems clear that the boyfriend is not able to attend to your mom's care and welfare as he would like even though, of course, he would like her home, too.

POA's have a difficult and important role when these times of decision making occur. It is not easy. You are to be commended for reaching out here and expressing how you feel.

Gena / Touch Matters