Mum's ms getting worse

[Shelly1]

Didn’t know where else to go, so came here. Mum has progressive ms, and has been getting worse since the end of last year.

Fatigue is getting wworse.Some days she’s in bed til lunchtime, or til the afternoon, on the worst days, she’s in bed all day. Some days she’s too tired to sit up to eat, and has ate laying on her side in bed.

Her mobility is worse. She walks bent over. Sometimes when she’s very tired, she struggles to lift her feet. She has been falling more. She used to be able to slide herself along the floor, and pull herself up. But the last time she couldn’t get up, despite trying for hours. I had to get the Paramedics out to get her off the floor.

She’s sstarted wandering around in the middle of the night. Doesn’t seem to be any purpose, I’ve seen this on the Ring camera, otherwise I wouldn’t have known. When she’s doing this, she would be pottering around for up to a few hours, searching inside her rollator, or pulling at her clothes. One night she was opening the oven door multiple times, for no reason. Worried she could’ve just as easily switched it on.

She said she didn’t know how to turn on the tap, didn’t know how to turn it off, said didn’t know how to flush the toilet. She left a soiled pull up on the edge of the bathroom sink, said she didn’t see it. Then said she left it there to rinse out before throwing away.

She tells me she feels confused but doesn’t know why. She told me she couldn’t remember how to put her false teeth in.

The gp is going to do a mini mental memory test next week. They’ve already taken bloods and done the ecg, which I’ve been told are checks they have to do, when checking for dementia. Can’t believe I’m writing that.

She has carers 4 times a day. They’re great. They notice any changes before I do. As I’m only there in the evenings/weekends. I feel useless, I can’t lift her when she falls, she’s too heavy.

Pads are another nightmare, they cause her a lot of confusion.

I’m massively struggling with it all. I literally feel like running away from my life. I’ve already had enough for a long time, as others on here who’ve read my post before may already know. I’d got to the last straw at the beginning of the year, and had decided to move out. Found a property, got a mortgage sorted. All good to go. Then, as usual, life has to get worse, and all this confusion gets worse. Now I feel like I should be cancelling the whole thing. But I know she’s going to end up in a home fairly soon, probably before the end of the year.

I spoke to my own gp about how I was struggling. He said I was a bad state, and wanted to prescribe tablets. Of course, I didn’t want them.

Honestly hate so much responsibility. She’s not even safe at night when I’m here. If she goes to a home, it’ll be my fault for letting it happen, for not being good enough. If she hates it, and doesn’t settle, it’ll be my fault. If I try to keep her at home longer, I worry something dangerous will happen, what if she switches the oven/hob on and burns herself or sets the house on fire, what if she topples over and falls onto her head, and that kills her. It’ll all be my fault.

I wish so much there was someone else had all this responsibility

Anyway, thanks for reading this far folks

Edited to add- she owns her own home, in her name only.

[HorsyDeb]

Hi. Oh dear, for so many of us on here, our parents are a constant source of worry. My mum, is 99, has multiple but non-life-threatening conditions. Recently I have noticed a much more rapid decline in her cognitive skills. She is aware of this and gets very frustrated. She still lives at home. She has always said that she doesn’t want to go to a care home, although she is aware that a care home is likely to be the way forward at some point. She is depressed, and part of me thinks that maybe she would be better off in a care home with more company and activities. I visit her twice a week, but can do no more, as this amount already affects my physical and mental health, if I’m not careful. She will be going to a home for two weeks respite in September, so that might help us with our decision making process.

It sounds to me that you’ve done an absolutely amazing job in keeping Mum at home this long. Sometimes, a care home becomes the only and safest option for older people or those with progressive illnesses. I hope that things go well with the GP. I contacted mums GP last year when I was worried about her. Although he didn’t recommend a care home at that point, I know he would be an ally when the time is right. (I actually think that last year would’ve been too early for Mum to go to the care home, but I do feel it could be this year). I hope that your GP is similarly supportive.

My brother had early onset Alzheimer’s. My sister-in-law battled and battled to keep him at home, But in the end, he ran away, was sectioned and ended up having to be placed in a home. She said that she wish this hadn’t had to happen, but knew there was no choice. In the home, he was well looked after and safe.

Remember, you are important. You deserve a life. Please make sure that you look after yourself. Of course you would feel guilty if Mum goes to a home. That’s only natural. However, you would be doing it for the best of reasons. The deterioration in your Mum’s MS is not your fault. Good luck.

I’m going to tag @JayneyT @Knitfi @Michael_1910123 whose mums have all gone to care homes fairly recently. I’m sure they will have some sage words for you.

[bowlingbun]

My mum was so frail towards the end of her life the hospital said that even with a live in carer she was no longer safe to live at home alone. We tried everything, but in the end a care home was the only option. Fortunately mum agreed.
You have to focus on what mum NEEDS.
Clearly, from what you describe, she needs 24/7 supervision now, and that means residential care.
How to arrange this, how to manage the cost, depends largely on whether mum owns or rents her home?
Have you heard of NHS Continuing Healthcare? This is difficult to get, but would cover all mum’s care costs.
You need to look for a home which can covere everything that happens to mum until she dies. I know how difficult that is to think about, but don’t ignore it.
Have a look at the Care Quality Commission website and search for EMI homes - Elderly Mentally Infirm. Look at the reviews, and start looking at those nearest to your home. Realistically, you will be the main visitor. Some care homes, like my mum’s, had different sections depending on the amount of care needed, a really good idea.
Please don’t feel guilty about this, mum is lucky to have any children living near to give any help at all. Be proud of what you have done for mum.

[karthikyogaraj]

The falls and the night wandering are the two things I’d push on first, because both are safety, not just stress. The paramedics who lift her off the floor can refer to the falls team and OT — ask them or her GP for an urgent OT visit. That can bring a hospital bed, floor sensors and a hoist, so you’re not lifting her, and her night needs can justify more than four calls a day.

Given how fast and how complex this has got, ask the GP or social worker about a Continuing Healthcare checklist — if she qualifies the NHS funds her care whatever the house situation.

And book your own Carer’s Assessment; respite is a right. None of this is your fault. Has the social worker been back since the falls started?

[Knitfi]

Hi I’m so sorry you hit the “wall” of being burnt out caring. I did last June. Mum is 93 and has nothing really wrong just anxiety. Underlying is a covert narcissist personality which is extremely manipulative and emotional blackmail. I am remote contact only she had carers x4 but was falling. Had a fracture well 2 month in hospital then 6 weeks respite. Then wanted home. Home on a Monday falls Wed Thursday Fri. Still in hospital awaiting residential place however Thats her wants at moment. No beds wants out of hospital so may have to do that till place available
Enough of me. You need to think of yourself. I’m seeing a therapist and she has said Ive got to stage I should not push to do more or I will be in hospital. So you must do what mum needs. Looks like 24/7 care. She has MS which alone could bring about a care home. If she has cognitive problems now then that too can mean the same. Please do not beat yourself up that you have failed. You haven’t you have done your best. You need to have a life too.
I take it that the GP checked no underlying urine infection that has her confused.

[Shelly1]

Thanks so much. Yes you’re right, I have hit the wall of being burnt out. I got to that point earlier this year. Possibly before that, but felt it more strongly, and more often from the start of this year. I reached the stage where I knew I needed to leave, as I knew I couldn’t take any more, physically or mentally. I knew a relative would be upset at me for leaving, but I’d got to the stage where their opinion doesn’t matter any more. I decided I’d go, and if they didn’t want to speak to me any more, that’d be their choice.

Though I didn’t realise the extent of the cognitive issues back then. Although I was probably putting that down to ms, her have bad day with the ms, or a bad week. I was pushing to get speaking to the ms consultant, but that was impossible. I got to speak to the ms nurse, she was very helpful, and was the first person I spoke to who really listened.

I’ve left in urine samples and they’ve always come back clear. The gp did a blood test, for the confusion. The results of that were OK, but she did say something was a bit low, but they weren’t concerned about it. That was only mentioned to me, when I’d the phone appointment with the gp about Mum getting worse. I ended up crying on the call, so didn’t get to ask what was low in the blood test. We’ve another appointment with the gp next week, so can ask then. But the gp said it could be the ms, or a dementing process

[Shelly1]

The paramedics referred her to the falls team, but told me to send an email to the social worker too, to get it through quicker. The paramedics said there’s a thing you can get to help lift someone off the floor, it wasn’t a hoist, it was something else.

The falls team came out, and they advised for Mum not to go into the bathroom as its too small for her to use the rollator in there safely. They told her to use the commode instead. But she wasn’t happy about that, not ideal as you can’t flush it, so got to wait til the carers can empty it. She would use the commode if she’s having a bad day, and being very tired, and spending the day in bed. But if she’s up and about, she still goes out to the bathroom. Its only a small downstairs toilet.

She already has a hospital bed. Though no sensors. I thought 4 calls a day was the maximum. Doesn’t seem to be the option for someone staying overnight, though maybe they don’t provide that, as I’d imagine it would be very expensive for the Trust/authority to pay for. A relative says she knows a man who’s elderly mother had dementia, and he got someone to sit overnight with her. Though they must’ve paid privately for this.

The social worker seems to think Mum would be self funding, due to owning her own house. She hasn’t mentioned continuing health care. My relative thinks I should stay here, that the Trust shouldn’t sell the house, because I’ve always lived here. I’ve already reached the stage where I can’t do it any more, and so whatever happens the house, so be it. If it’s dementia or similar, there’s no way I could continue living here, and working, I know it’d be too much.

The social worker has spoken to Mum about homes. She doesn’t think Mum would be safe if I’m not here. That’s the bit that is so hard, like I should stay to prevent her needing to go into a home. Though I know she’s not safe at night either, when i am here, and I can’t lift her when she falls

[HorsyDeb]

I feel for you. I know that I will have some guilt when my mum needs to go to a care home. However, I also know that I could not cope with mum full time, and that fairly soon she won’t be able to cope at home on her own either. There will be no choice.

I feel that you’re in a similar situation now. When your mum goes into a care home, you will not only be looking after yourself, you will be prioritising your mum’s welfare too. Ignore that relative, they clearly do not understand the situation you are in.

[Shelly1]

Thank you. I haven’t looked after myself for a long time. Work is a break from home. Evenings and weekends, feel like I’m starting a shift at a 2nd job. I joke that free time is something other people have, because I’m so used to not having any. I don’t have time for hobbies, or a social life.

I would love even a weekend off, where I could relax and not have to be on call/stressed/busy. I’d be entitled to respite, but it’d be more bother than its worth. Mum would more than likely hate it, blame me, complain the whole time. My relative would be dishing out the guilt trips. Yet I don’t see this person offering to stay for even a weekend to give me a break. Im expected to keep going til I run myself into the ground. This relative thinks a pity of us both, says worries about us every day. But has always been against me having any sort of life of my own. Loses the plot at any suggestion of me living separately from Mum, even a few years ago, before mum’s health got worse. And times I just think, what they do if I’d never been born. Or if I was married with young children. Makes you feel a bit used sometimes

[bowlingbun]

Relatives are often thinking solely of rhemselves. My sons and I haven’t seen any relatives since mum died 10 years ago. They were “too busy with work” to give any assistance, or even send me a get well card when I was having cancer surgery, but demanding their share of mum’s money with indecent haste after she died!
Tell them your relatives that they have no right to comment on what you do if they do nothing themselves!

[Shelly1]

Aw sorry to hear that, it must’ve been so hard. I’m lucky to have some good friends, but at the same time, I don’t want to be a burden to them, with all my doom and gloom. I’ve booked to speak to a counsellor, which I can access through work.

If I told them relative she’d no right to comment on what I do, or any words to that effect, I think she’d explode

She told me before she couldn’t do what I do. And she also said she’s too old. She’s 70, but thankfully fit and healthy. She helps a bit by making some phone calls (admin), that sort of thing, which I’m very grateful for. But it’d be great to have an actual break.

[Sue24]

I’m so sorry you’re going through all of this. My late husband had numerous falls over the years and eventually went into a care home before moving himself out into assisted living. There are self inflating cushions you can get to raise mum off the floor but like everything medical they’re expensive! I too reached burnout when husband moved into the carehome. His brother hasn’t spoken to me since but you have to do what’s right for your own mental well-being and health. Relatives don’t know exactly what you’re going through, do what’s right for you

[Knitfi]

Yes your like me at burnout. It helped me when I was told and read that this is a biochemical response. Me for 60 odd years of walking on eggshells reading moods all the time my feelings ignored etc. being an only child compounded it but others are the same where no one else in the family bothers. The rule re her home is if she only resident then it would be sold. However if you were living in it with her and had done for 6 months or more before this situation came up it would I believe be deferred loan and then maybe half used. Only what I’m remembering for my mum but hers is a straight need to sell.
There is a cushion that inflates up under the person who has fallen but I thought it needed 2 people there with the person that fell. Can’t think of anything else.
Re continuing care if mum does have dementia and MS she might be eligible more so than if only had 1 illness. However it is hard to get it.
I’d certainly ask the GP what was low and get explanation as to why Thats ok. Lots of blood test get that response from a GP ( GP receptionist and admin person for 26years until retired 2020).
Family do not understand burn out. I googled my “can’t do it anymore” from last year and it’s my brain not able to supply the adrenaline to keep me doing it. Basically you body working with your brain to make you stop before you become very ill.
Take care

[Greta]

I am just popping in here as I saw a reference to a cushion. My brother was very heavy and if he fell down he could not get up. The local ambulances brought this cushion called Mangar Elk - he sat on it and it was inflated with oxygen till he was standing. I think there was only one in the borough, so paramedics used that - maybe that was used in your case.

[Shelly1]

@Knitfi thank you, you are right I do feel burnt out. Got to the stage at the beginning of this year, (though it was there before that too), that i knew I couldn’t do it any more, like physically and mentally exhausted. I remember feeling that, if I kept on, I would end up somehow very ill, almost like my body was telling me I couldn’t keep on like this

[Shelly1]

@Knitfi I’m an only too. Single too, so no other support really.

Yes it’s her house, and I’ve always lived in it. Though it wasn’t what I wanted. Family pressure. Am in the process of buying somewhere for just me, but now everything’s such a mess. So yeah her house will likely be sold.

[bowlingbun]

Shelly, please read up about “Charging for Care - Property Disregards” before you move out.
If mum goes into residential care, the value of the house may not be considered if you are still there. Talk to our Carers UK helpline about this. They once made me £50 a week better off, about 30 years ago, because they knew more about the law concerning Carers Allowance that the DWP Carers Allowance Unit!

[Teddybear]

@Shelly1 hiya shelly1. Do not leave the house. Do not tell the SW that you are thinking of moving out and getting a place of your own. And anything they tell you always research it .the following all depends on how old you are. In the uk ,you mother’s property is not automatically disregarded in a care home financial assessment just because you are her relative and live there. However under the care act 2014 local councils must disregard the property if the relative living there is aged 60 or over or is incapacitated /disabled.

If you are under 60 and not disabled the council is not legally forced to disregard the property, but they have the power to do so at their discretion.

Your rights mandatory disregard if you are over 60 or disabled the house is permanently disregarded.

Discretionary disregard .even if you work full time and are under 60 local authorities have the authority to disregard the property to prevent you from becoming homeless .they look at the length of time you have lived there and your caring role.

You can look at the care act 2014. Ring the carersuk adviceline. Or your local citizen advice bureau. I hope this helps .take care.

[Shelly1]

@bowlingbun it doesn’t surprise me they knew more than the dwp

I read about property disregard, but believe it only counts if the relative still living there, and is under 60, is also disabled. Then with me working full time, they’d likely argue that I could afford to house myself, which would be true.

I’m not sure when she will go into care. Some days, when she’s bad, it feels like it would be soon. Other times, when she’s having a good day/period of good days, I think she doesn’t look like someone who needs a home.

I’m exhausted commuting a long distance to work, and have no life. To finally live closer to work, and be able to start living a bit, felt like a light at the end of the tunnel. I think what was keeping me going this last 6 months, was that I was finally going to escape, that I wouldn’t have to keep living like this.

I’ve the mortgage set up, and solicitor has been working on their bit. They told me the seller was hoping to complete by the end of this month, but I said early July would be better, as that suited me better for work. I suppose the fear of cancelling the whole purchase is, I’ll be still here in the same situation in another few years time.

Its all so much responsibility. I’ll get blamed if she goes into a home. The last time the Social worker was out, she spoke to Mum about homes, and Mum said she’d be ok to do that. The Social worker told Mum to think about it, and get me to let her know. That was the end of it.

Then there is the other relative. The one who’ll blame me if Mum goes into a home too soon. One day the relative was talking to me, and seemed on board with the fact that Mum will need a home at some stage. But other times, she seems to be in denial about Mum’s worsening health, and talks as if Mum just had something to lift her mind etc, she would be ok.

My head is frazzled

[Shelly1]

@Teddybear I’ve lived with her all my life. Long before her health was so bad, it wasn’t allowed to move out, due to being an unmarried woman.

The social worker knows I intend to move out, and will be amending the care package to add lunch and tea calls for the weekend, though I’d be going back to the house at the weekends anyway, to do things for Mum, cleaning, shopping etc.

I think the whole thing of 'at their discretion ’ seems so scary, like it’d be really stressful. I imagine that to happen if I still lived here, and Mum had to go into a home, then the authority would be looking to sell, and giving me a set period of time to appeal it, or find somewhere else to live. The idea of doing that, whilst travelling a long distance to work, and coping with mum only newly in a home, trying to convince the authority to let me stay, whilst looking for pet friendly rental, all at the same time sounds like a nightmare. Being at their discretion, seems like too much of a grey area. So I thought, at least if I buy somewhere, I don’t have any of that to worry about.

If they did let me stay under this discretion, living here myself, it would be better to live near work, so if I moved at a later date, I’d image they’d be looking the house sold then instead.