I put mom into an Assisted Living place June 14th and now within just 2 months, her physical state has declined to the point of needing 24/7 nursing care. As much as I hoped (and was told) that the Phoenix would be able to handle her care, it was a joke. Part of me had to be understanding that they did NOT know anything about her disease, but the majority of me was angry. What's worse... I honestly didn't know some of the things that were happening that were directly affecting Mom. For example, her right side is now affected and getting worse and worse so she is unable to open the Styrofoam box to open her food when they bring it to her, she cannot open the plastic utensils, so guess what? She's not eating near as much. I only realized this recently when I saw them bring her food in, sit it down (assisted living care again) and then leave. They come in, ask how she is, and if she's ok they leave. I sat and watched 2 caregivers come in, help her to the bathroom, but they had no idea how to watch out for her or how to direct her when she was attempting to use a walker.
I'll be honest - she can barely use her walker now. In May, she could grasp it, walk with it and use it better - today she barely hangs on, but it always gets in front of her and that's where she starts to lean forward and it causes falls.
I was disgusted when a caregiver completely ignored her calls at the front desk when she fell and she was on the floor for an HOUR before she got help. They always call me when she falls, but I was informed 35 minutes after she fell, told that she was ok, and that was it. I always call Mom after I hear she's fallen to hear what SHE has to say. I was sick. She called the front desk, didn't have her pendant put back on, had to call 3 friends outside of the home for help (2 of them got there asap) and then when they got there, the fucking caregiver was like "Let me see her phone. She didn't call the front desk" to which mom's friend refused to let this kid see it because we all knew she was lying and would probably delete the proof that she called.
Everything has just accumulated and now she's unable to do anything without transfers. She walked 20 steps the other day and the therapist asked her "on a scale of 1-10 how tired are you?" and she said "7".
I knew this was coming... it really too effect after my brother left last Sunday. I had wondered if something would happen after he left, and sure enough it did. She's not fighting me on needing to move, but why oh WHY did I believe they could take care of her with this shit. (SHIT meaning the disease bc it is shit!)
I never wanted her to go to a Nursing Home, I wanted her to stay here, but it's so very clear they can't do it. No one knows shit here. I've volunteered to educate their staff, but they don't want it. I'm mad. Angry. Scared. And I'm not even the one declining. I'm hoping to find a place for her asap, but I know there could be wait times and or wait lists, but maybe I'll be lucky. She's coming home for a visit next week, will be with me about 3-4 days, and I'm even wondering if I can handle that while she's home. My wife will be gone for work so it's just me and Mom, which is fine, but I'm also wondering how it will go this time...
She had botox on 7/23 and I was hopeful that she would get some movement back. The only thing it did for her was keep the dystonia at a minimum. She still has certain things "locked" in place that have not been able to fully relax. She's exhausted all the time now. Even going to the bathroom (10 steps or less) exhausts her and all she wants to do is lay in bed. This is not my Mom. I know it's the disease, but wtf, this is just not my Mom. Her feet are now slightly curling inward when I try to get her up from the bed. I can usually tell her to look at her feet and try to get them straightened out and flat. Sometimes she can do that and other times she cannot.
I'm reading and re-reading my notes and things I've gathered from Google, but I'm assuming she is heading toward the "Advanced" Stage if she's not already in it. What's odd is, she has days where she's mentally sharp, others where she isn't, but sometimes it's hard for me to decipher what's happening because the good days I think "there she is" and then the bad I think "there's cortico..."
Any suggestions on what to watch for at the Nursing Home would be wonderful. I'm fully aware that whatever they say they'll do, may not happen...
Thanks everyone,
-A
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Oh Amanda I’m so so sorry to read this ! I have been sick these last 3 months and haven’t been on here at all . I will try to call your mum tomorrow I was at hospital today and I’m exhausted. My speech is pretty bad but I’ll try and have a chat with her. I’m disgusted reading this I really am . Your mum is such a lovely person and a fighter , how dare they treat her like this ! I hate this disease as no one except those affected by it take it seriously…. My thoughts and prayers are with you xxx
Oh no - are you doing ok? Her speech is getting slurry, but still ok some days. Please let me know how you're doing. It's been a while since I've been on the forum - thinking and praying for you!!
Oh no! I’m so, so sorry to read this. They clearly made promises they could not keep. How disappointing and upsetting. Your mother needs or will very soon need constant direct supervision and help—eyes or a monitored camera on her at all times. She will need help with all mobility and transfers; toileting many times a day and night; being dressed and spoon fed. She may not be able to call for help by herself at some point, and may lose communication. When they claimed they would be able to provide all the help she needed within their facility. I thought that meant they had their own nursing home area onsite, as some do, since they said she would never have to move. I’m so sorry what sounded so fabulous was a bust.
Re: NH and what to look for, in the US, I would study the nursing home ratings (inspection results) and characteristics on the Medicare website. I would look for good food and can they manage special diets such as soft, minced, puréed, thickened liquids—or PEG feedings if that is a possibility. Can they manage a Hoyer lift. I would look for space where your mom in her wheelchair can be walked around for air and a change of scene. It might be good to know if private hire caregivers are allowed, as additional help.
If your mother doesn’t have ‘skilled nursing’ ie medical needs, she might be able to be cared for in a smaller board and care home or certain assisted living places if they can manage nonambulatory high needs frail elderly. Those are not rated by Medicare so are a little harder to get reviews on. I hope you find a great new place for her that will give you peace of mind.
Thank you for all the insight, very good notes I've made. And yes she was in an Assisted Living place and I was hoping she could stay indefinitely, but they just don't have the kind of people working there that are nurse level, they don't have the lifts, etc. We are going to look at a Personal Care home on Thursday. Supposedly they have a 1:5 ratio and they will be able to feed her when necessary, as well as having skilled nursing available. They have room right now, and if Mom likes it, I think that's where she can try next. I don't want to have to move her again and they said she can age in place, but we'll see... I'm hopeful that they have what she needs there.
I can totally sympathise. My mum moved to assisted living in April and we were so disappointed with the "care". We now do not use the care staff at the facility and outsource it elsewhere. As mums flat has a second bedroom we were able to get a live in carer. Are you in the UK? Are you aware of the NHS continuing health care (CHC). It may be something to look into. I'm so sorry things are like they are for you and your mum xxx nhs.uk/conditions/social-ca...
Hi there, no I am in the United States and had considered hiring more caregivers to come in, but my Aunt was saying if I do that, then the staff at the Phoenix would just stop all together. I was conflicted about it, but they would still have to bring in equipment for her I think... I have no idea though. It's crazy because I kind of knew this was coming, but then it happened so fast and now I'm trying to scramble to get things re-organized. eeek....
I did, a few times, but the last time I realized they just weren't going to fix anything. It's very sad. And what's more upsetting, is knowing Mom isn't the only they're ignoring...
Sorry for what you're going through, but your story helps reaffirm my desire to keep my wife at home just as long as possible. While I occasionally "threaten" to put her in a home - when I'm super-frustrated - I will care for her and hire in-home help if at all possible, for as long as possible. BTW, she is in the advanced stages: can't walk, bare speaks a word or two, pureed diet and full time diapers. Not fun. But the good news: No pain and still thinks fairly clearly (we think) -- just can't express herself other than a yes/no or thumbs up/down. Beware the thumbs up, as we often get the same answer whether asking the question positively or negatively.
I'm so glad you can keep her at home with you. I really wished I could've done that for Mom, but she was so isolated from her comfort zone and her friends. Prayers to you and your Wife! She's lucky to have you 🥰
I honestly do not think the staff at an assisted living will ever be able to give the type of care your Mom needs. They are not trained to provide the level of care she needs. Perhaps an ASL with a memory care section will do better, but even still the care may be lacking.
Have you considered Hospice and then hiring a personal aid for 4 to 6 hrs for 4- 5 days a week?
I don't know your financial situation or what state you live in, but perhaps your Mom could qualify for Medicaid long term home care.
Hospice would provide the Hoyer lift if she qualifies. But even with hospice, you need to make sure the nurse, case Mgr is familiar with PSP and CBD.
And yes, you are so correct in that these neurological diseases are sooo crappy.
Yes I agree in the US have Hospice come in look into there services. They are skilled from CNA to Doctor to assist you. Medicare pays for it if mom has personal insurance as long as deductible has been meet they pay 100%. Hospice dosen't mean death like many think. They don't offer staff in North Carolina where I am but CNA 2 times a week to help, nurse checks in weekly. And helps patients meet there personal goal. Best of luck to you all.
A big virtual hug for you. I can feel your desperation, anger and sadness.I hope you find soon a care home that understands the condition and are able to take care of her properly.
I'm in a similar situation with my dad. He's moved out of his flat and into assisted living accommodation for just over a year now. The place has no automatic doors and is a struggle, I feel these places are for for 'able bodied' people but really fall short if they are using a wheeler/wheelchair, which my dad is.
We get meals delivered to him and food shops. I had to write instructions for the carers as they had no clue he couldn't open yoghurt lids etc... things that is just common sense and really frustrated me.
If you want something done right do it yourself but as you know we cant be there all the time. I'd try doing written instructions for the carers.
Health care services are really stretched over here in Scotland, they're definitely buckling under the pressure and don't have enough carers either, its all a mess really.
Hope this helps or at least feel you've got someone in the same situation. Really horrible thing to see your parent go through.
Hi there, I'm so sorry to hear you guys are struggling too. It's really unfortunate! I did just find a new place for her that I hope works. Not sure if they have this type of place in Scotland, but it's a Personal Care home. She will be 1 of 3 residents with 2-3 caregivers 24/7. It's in an actual residential home and they can only have up to 3 residents at a time... but it's going to give her 1 on 1 care and a more home-like feel. I hope you guys have something like that. It's kind of rare here in Atlanta too, but they are around.
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End stages? not sure, any advice
Changes
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Feeling broken hearted 
