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Hi all - My 86yo mother is rapidly declining physically and cognitively (vitals still good). She was moved to the rehab side from her AL facility about 10 days ago. They're not quite sure yet what's going on - she's completely lost use of her legs in and has trouble swallowing - but I trust her CNP, and we are working together to determine the prognosis and ultimate decisions for her treatment and care. In the meantime I DREAD calling her - she's very difficult to understand now, but is obviously very angry and depressed. She's blaming me for 'putting her there' and it's all for money, which I know isn't rational but still is difficult to hear. Add on to that we may need to move her to nursing care during a pandemic, and trying to structure her finances in case Medicaid is down the road too. Any advice and/or words of support are appreciated! :-)

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Covid is making everything such a mess...I hope you and the docs can find a diagnosis for her problem.

Please make sure you know the "lookback" period for her state of residence so that you can be fully aware of what they'll be scrutinizing.

If her facility is able to set up Zoom or FaceTime video chats I'd do that with her so she can see you, but when she veers into negativity and unproductive talk you will need to redirect the conversation to other things, like positive news about family and friends, funny things your pet did, anything (and it helps to have this thought out before you call her). THere's not much else you can do except to reassure here there weren't any other good options and you're doing your best to make her situation better.
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Unfortunately with her history it sounds like your potential course has to be driven by diagnosis, so she’s actually where she needs to be right now.

Does it sound to you as though she’s acting out because she doesn’t understand and/or remember why she was moved? With her age and history, that certainly wouldn’t be unexpected. If she’s used to better mobility, that would be a further frightening and traumatic situation.

Have you been able to ask her caregivers what they suggest, and how she’s acting when she’s not speaking to you on the phone? If she’s relatively peaceful and seems comfortable, it really might be better for the time being to call her more infrequently for the time being.

You have every ounce of comfort and support my poor words can offer. Hugs too. Doing the hardest things imaginable with the deepest love from your heart is sometimes all there is to do. I’ve been there in the past, and I’m there now too. Please be gentle to yourself, and stay in touch as often as you can with those who are with her now.

Take peace from the fact that your actions are driven by your love for her. However far away she seems right now, she will know that.
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Sounds like your mom may have had a stroke. Why not get her to the ER for a full evaluation and the proper tests ie: CT Scan, MRI, etc to find out what's going on, exactly?

While covid is a real issue, not getting necessary medical care is a much BIGGER issue right now. My husband had to get open heart surgery on Oct 30th in the middle of this pandemic mess, and I visited him daily, and both of us came out virus free. He's back in the hospital again now for lung issues..........but what's the alternative? Get your mother the medical care she needs so a proper diagnosis can be made. THEN the CNP can devise a treatment and care plan based on the findings.

My mother is almost 94 and lives in a Memory Care ALF which she had to be moved into after a stint in rehab and a stroke. She blames me for 'putting her there' too, because her brain isn't working right anymore. I find it very difficult to talk to my mother on the phone lots of times, so I keep the conversations light and BRIEF. As soon as she goes off on a rant, it's time for me to hang up. I set down boundaries with her in spite of her dementia...........because it's necessary for MY well being. Remember: there isn't only ONE person involved here. YOU are equally involved and equally important as your mother. Decide when you will call and how much time you will spend on the phone with her before the conversation gets too toxic. Then it's time to say goodbye.

Wishing you the best of luck with everything you're facing; it's not easy, I know. Sending you a hug and a prayer, too
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pattiac Nov 2020
I appreciate your advice about how to handle the situation. I'm going through this now with my Mom, recently in the ER, hospital, and now rehab in the hopes of assisted living or long term care, and am trying to act on her best behalf while she is suffering from delirium and advanced dementia. She is so upset with me and everyone who is trying to help her, and doesn't understand that she can't go home anymore. It's draining and I hope everyone here can get through the heartache of making such tough decisions. Hugs to all.
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I agree with lealonnie, sounds like she needs an ER visit to determine if she’s had a stroke or is something else going on that could cause her symptoms....best wishes as you move forward to getting a diagnosis.
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What investigations have been ordered? Anyone done a CT scan?
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If this is a rapid change I am concerned, with symptoms you mention, that there may have been a stroke? Swallow problems, some aphasia in speaking to you, change in mobility. Has she been worked up for this.
You say you trust her medical care. Has a UTI been ruled out.
You are doing the best you can in these trying times, and I think that is all that you can make clear to your mother. She is alone, afraid, and seeing changes she doesn't understand as well, so there is hardly a reason for her to be happy on the phone.
Try to reassure her that all are doing the best they can for her. So sorry you are going through all this, and Mom as well.
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We are going thru something almost identical with my FIL. His short term memory is VERY low-like on a constant loop. He had started showing difficulty with mobility on last Tuesday-shuffling his feet. Overnight that night into Wednesday morning he fell in his room. They called us and said he seemed OK-no visible bruises scrapes, etc and to the beat they know he didn’t lose consciousness. But by Breakfast Wednesday AM he was shuffling and had a strange gate. We thought it might be soreness from his fall. He walked down 2 houses from his AL house to the MC House MIL Alice’s in. By lunchtime he couldn’t walk back and they had to have a wheelchair. We took him to the ER and had a full set of scans-Nothing. Blood and Urine tests...Nothing.
He is in a transitional nursing/rehabilitation facility. He is dealing with delirium, he is fine one day, mumbling and forsaken the next. If he can’t regain his mobility, he won’t be able to go back to Assisted living, and we will have to look at applying for Medicaid and all that entails.
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What does your mother's doctor say/do: exams for a stroke, any exams/tests for other disease processes...? Loss of abilities "suddenly" points for some disease process that must be addressed - usually in a hospital. Once the disease process is addressed, then rehab makes sense.

Rehab is exhausting since the patient/client is expected to work hard to regain mastery of whatever function is "impaired". Does your mother resent that she is expected to do a lot of hard work? Does she expect to just have her needs met -regardless of her sudden inabilities?

If she does not really participate in rehab, then using the money for this type of care is a waste. She may do better moving into either a long-term facility which can meet her needs or in having paid help in the home to meet her increased needs.

Good luck.
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For now, back off from mom. It is not good for her to be getting upset.

Talk to staff to check on her progress,
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In my experience you will get blamed for anything and everything at this point. Think children (toddlers or teens) - you don't expect much in terms of gratitude and much of the angst is levelled at the in house parent/parents. (Quite often the absentees get away with it!).
This might help you with perspective.
I think we are not very well prepared for how people behave in old age - at least here in the west. Most of the films we see portray old people and dying in quite a santised way. The upshot is that it is a shock to find that in the place of a reasonable human being you have a petulant and indignant relative who turns on you.
Needless to say, not everyone is the same but this was my experience. Although, to be fair mine we not always reasonable to start off with! 😉
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BilliesDaughter Nov 2020
Thanks wiseowl - that's certainly the trend with my mother. She had a rant Saturday blaming me, and claiming we (my sisters and I) didn't give a s*** about her and she wanted to die. Such drama! I had to laugh at one comment she made - 'I don't have anybody else to yell at besides you!'
Mind you, she's in rehab temporarily and NOT in a concentration camp, for heaven's sake.
As with you neither of my parents were the most rational people to begin with, so this is her longtime behavior on steroids.
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Boundaries ... Thats What Helps Me
They are Sick & They Arent Changing
Keep it Brief ... Listen for a Min or Two Say Yes I Understand then Tell Her You Love Her & You Gotta Go You Have Another Call Coming In Work Is Calling
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Dusing the Pandemic the elderly should be kept at home if any way possible.

Where they feel loved, happier, not depressed and not scared and lonely.

Bring loved one home to live her last days in peace and comfort and hire Care for help
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I would get an opinion from a regular Doctor. Though a CNP is ok for some things, their training does not replace the years of training a regular Physician goes thru. My significant other is a Doctor, and I have heard so many scary stories from him about CNP's.
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You are doing everything you can do. Your mom is safe and cared for by professionals. You are acting in her best interests.

Just keep repeating that to yourself. And limit the calls if they are upsetting you. I don't think it helped our parent in care feel any better to rant to us about "dumping him" and trying to steal his money. I think it just got him more upset. So we stopped calling as often. We call maybe once a week, depending on how the last call went.

We call the caregivers to get reports on him. This is so hard. I'm sorry it's happening to you.
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Hi Billies daughter!
I too have an ageing mother in decline and my mother is 83 in AL. I have a meeting next Monday with CPN and new mental health team for her and dreading it. I total feel for your situation and my situation is just knocking on the door of yours. I know it must tug on your heart strings and she is trying too, believe me. She doesn’t really want to upset you but your mother is lashing out and her own frustrations mainly. She loves you and wants to make you understand but she doesn’t really blame you, you know. I’m sure of it. If you’re the only child that has to sort this out, it’s extra hard(I know)!! Please let us know how it goes and what happens next for your mum as your advice will help me and others too. I’m thinking of you. So hard for you and your mum x
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Definitely get her to the ER so that a diagnosis can be made then the CNP can work on the care plan. Sounds like Speech Therapy is in order. Set a time limit on your phone calls. Talk about happier times in the past. Talk about your family. When you can understand her better ask her open-ended questions that she can answer to avoid the negative ramblings. Just remember that she is in the best place & you need to focus on yourself. Start the day with naming what you are grateful for, maybe finding a virtual Alzheimer's support group, spend more phone/facetime with your friends, family, & get counseling if needed. You sound like you're doing what you can for your mom, find peace. 🙏
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The virus regulations that have been so badly needed, have been so hard on us, we can not even imagine how it has affected folks in care homes. It really adds to their confusion, hurt of missing loved ones, might not be the same activities or exercise, etc.

So for the family members it has made it even more difficult with hearing their loved ones anger, loneliness, diminished health, etc. over what they go through prior to the virus. My heart goes out to each of you. You just need to know you are doing the best through this very difficult time. Checking with the doctor to make sure medically and care the best is being done.

It is easy for others to tell you not to get upset by any of this, however that will not happen. It hurts you deeply. Being a caregiver for a loved one is like being a parent to a child. But they aren’t. We want to fix everything. We can’t. But we can make sure they are safe and taken care of the best way possible. We can not fix everything. We can try to calm them, but if that is not working, change subject and let it go. If that means less phone calls, visits, etc. You need to take care of yourself. Take care of yourself first. Be kind to yourself. Don’t beat yourself up by any of this. You are doing the best you can in this very difficult time in the world.

I always felt a bit strange as my Mom’s caregiver being her mother, but yet she was still my mother. As she demanded things, as she was angry with me, when she refused to do what was necessary, etc. Hard to explain until one is going through it. Now my husbands caregiver. But being a mother to my mother was different. Just know you are doing your very best for her and continue showing her your love in what ever way is possible. Sending you big hugs.❤️
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You are definitly in a tough stage with your Mother. All you can do is keep focused on what is important. Strive to not take her conduct personally Who is doing what yiour doing would be getting it.

If you have not already find an alternate to go in your place for XX number of days a week or month.

When you get home from this position your home envirnment to be a safe and calming respit from what your dealing with. Be sure to get exersize, get some sunshine. Avoid liquer. Maybe get a massage.

Be thankful she is in a facility and not in your home. Know this time WILL end. Make sure you and your support IE family are doing things that will allow you to look back and say.. Im glad we did it in this manner
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Sorry I can't offer words of support as I am a younger person 63 who just spent a couple weeks in rehabhell. All of my own doing; I had firmly made clear while in the hospital for a dissected aorta (often fatal) that there was NO WAY I was going to rehab. But the day prior to discharge I had a bit of pain and succumbed to the staff pressure who knew Ihad virtually no support asI was going home to (my father age 103 and deaf, and mom 98 with dementia who was clueless).
I am here to tell you it was one of the worst experiences of my life. The food was dreadful, and seemed punitive because I said no pork or red meat every other meal was a nauseating grilled cheese. There were meals so bad I felt so yucky afterward I told a nurse one night I didn't even want to try to take my meds because I was afraid I would vomit which I had no strength for. I wanted to go outside for some fresh air and that never happened. I truly felt prisoners had more freedoms and rights. I was so stressed just being there, and then all the COVID BS, I felt I was not going to recuperate any worse at home and announced my departure several days forward. I would never advocate rehabs as result of this. Better people get home and have help or therapy coming in. This truly impacted me and my mental well being. I had chosen this place based on proximity to home so my dad could easily visit. Then was told there was a 2 week quarantine on new people. Limited to window visits. Only the window was not allowed to be open! OK, I understand what's behind that, but my dad is deaf and uses an iphone dictation ap to communicate with, so that would not help. That was pretty much the last straw for me. Now I have learned when our elders complain, it IS often with justification. The only thing I would suggest is that the Medicaid process is a challenge, and if finances will let you, I would consult with a certified elder law attorney to take that burden off of you. Even at my age the expenses for my episode are enormous ($47K for the helicopter that got me to the hospital to save me) and I may be looking at applying for medicaid myself. IT shouldn't take a pro to handle it all, but regrettably it does or assures everything is done right by someone experienced with it.
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Daughterof1930 Nov 2020
I’m sorry for your experience, it sounds horrible. My dad did rehab at a number of different places. He found wide variation between the quality of them, some he really enjoyed his time, others he was miserable. Sometimes one he’d been in before and had a good experience would change ownership and be awful the next time.
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We got a video device to communicate with my Dad. He couldn’t answer his phone well and was completely isolated. The one we purchased, viewClix, comes on when we call without him needing ya do anything. It’s been wonderful
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Time to get a geriatric doc to treat her for depression. It can be vented out towards people, Not just inward. She sounds like she is suffering. They dont have to suffer. Its sad and distressing to them. Good luck
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Imho, I am so sorry that your mother is unhappy. Prayers sent.
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I am glad you have a Doctor you trust. I hope you get some answers soon.

TIA/stroke can have symptoms like swallowing difficulties & I think kidney problems can cause all sorts of fatigue/decline but there are so many other causes... sometimes I suppose no answers are found. You just have to accept *old age*..

Mother is not accepting this, hence her anger.

"She's blaming me for 'putting her there' ".

Big sigh 🙁. Suggest she put that anger towards her recovery instead!

Be empathetic (yes it must be tough being there Mother) but don't accept the blame (Mother OLD AGE put you there - blame that).
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