Stairlift vs bathroom downstairs

[CLau256]

Hi @CLau256 , I'm hoping the Occupational Therapists saw through your grandmother's partner's insistence about the stairlift and were looking at what your grandmother actually needs. Whatever happens it sounds like she needs more help coming in, than she is actually getting. A downstairs wet room sounds good, but if she can't actually get to it, it isn't going to help.
Do you think George might be in the early stages of dementia too? Obsessing about things sounds very like my mother's behaviour when she was still at home She got stuck on whatever she thought would improve her life and shifting her from it was very tricky. In mum's case it was changing the locks so the neighbours couldn't get in (they weren't).

To be honest, I am not actually sure if the lady who came round was actually an Occupational Therapist or if she was just a social care worker. We thought she was the OT (since that’s who we made the referral to) but then she said she will need to get the OTs into the house. So I am not sure how qualified she was to make the comments or if it was just her opinion. If one day she eventually needs wheelchair, I think the wet room would probably meet those needs.
George has just always been a “faffy”person and a panicker for years and years. That’s just his personality. He’s not changed in the past ten years to be honest. He’s not very good at any household tasks, apart from putting M&S frozen meals in the oven. But like I say, he’s always been like that, it’s nothing new.

 

[lollyc]

I'm afraid George is in for a big shock if he thinks the stairlift and adaptations mean he won't have to do anything to help your Grandma.
We had a toilet frame for 2 years. My mother would NEVER use it if I was not there prompting her, preferring to grab the sink, the radiator, the toilet roll holder, or anything else, except the frame. I have been in disabled toilets with her, bristling with grab rails etc., and she has said "there is nothing to hold on to" ! Your Grandma is unlikely to be able to use these things unattended.
Console yourself with the fact that you can say "I told you so", when it all falls apart - but that's not really the point, is it?

 

[CLau256]

So we lost the battle. The stairlift got put in. Ever since it has been put in, it has enabled my Grandma to get up the stairs but now her legs are considerably worse as she doesn’t use them to even get up the stairs anymore. She can barely get off the sofa! This has all happened in the space of a week. So my Dad approached the idea agin of rearranging the downstairs, the potential extension downstairs to enable downstairs living one day if it came to that. He’s been told by my Grandma & George “We don’t want it doing, we don’t want anymore change”. Now I’m not convinced my Grandma has full capacity to make these decisions, given that she doesn’t actually know she has Alzheimer’s or generally memory problems of the sort. If you ask her to get up and walk across the room she claims she can do it, but she can’t. I’m really disheartened that she’s clearly listened to George, who probably doesn’t want the fuss that comes with extending the downstairs. It’s not his house, he is not authorised to make these decisions about my Grandmas house that she owned with my Grandad before he passed. I am reaching the point that I am angry she isn’t listening to people who want to do better for her and is clearly just going along with whatever George says. She’s going to end up in a care home at this rate.

 

[silkiest]

Hi @CLau256, I'm surprised the company fit the stairlift if they knew your Gran has dementia. There can be serious safety issues as she deteriorates. My mum has had a stairlift for several years but she is starting to struggle after only a years diagnosis of Alzheimer's.
I can understand that the thought of work on the house can be daunting. We moved MIL into our house when her bathroom had to be renovated, is that something that could be considered in your case if the work really needs to be done?

 

[Weasell]

So we lost the battle. The stairlift got put in. Ever since it has been put in, it has enabled my Grandma to get up the stairs but now her legs are considerably worse as she doesn’t use them to even get up the stairs anymore. She can barely get off the sofa! This has all happened in the space of a week. So my Dad approached the idea agin of rearranging the downstairs, the potential extension downstairs to enable downstairs living one day if it came to that. He’s been told by my Grandma & George “We don’t want it doing, we don’t want anymore change”. Now I’m not convinced my Grandma has full capacity to make these decisions, given that she doesn’t actually know she has Alzheimer’s or generally memory problems of the sort. If you ask her to get up and walk across the room she claims she can do it, but she can’t. I’m really disheartened that she’s clearly listened to George, who probably doesn’t want the fuss that comes with extending the downstairs. It’s not his house, he is not authorised to make these decisions about my Grandmas house that she owned with my Grandad before he passed. I am reaching the point that I am angry she isn’t listening to people who want to do better for her and is clearly just going along with whatever George says. She’s going to end up in a care home at this rate.

As your sad story goes on I fear it will be resolved with a hospital admission, then a realisation that a safe discharge is a problem ! ( care home required).

Having depressed you further I will give you the good news that incentivised me to post again.

My mother is going through one of her ‘ let’s spend my life in bed cycles’ I keep thinking ‘ how is it possible you can still walk ? But she does ? I do not understand how you can not use the muscles, yet they still respond and allow walking? So still hope ! even with new stairlift.

 

[CLau256]

Hi @CLau256, I'm surprised the company fit the stairlift if they knew your Gran has dementia. There can be serious safety issues as she deteriorates. My mum has had a stairlift for several years but she is starting to struggle after only a years diagnosis of Alzheimer's.
I can understand that the thought of work on the house can be daunting. We moved MIL into our house when her bathroom had to be renovated, is that something that could be considered in your case if the work really needs to be done?

Well my Uncle organised it so I’m not sure what he has said to get one fitted. Yes, we have always been wary of the issues surrounding safety of the stairlift in Alzheimer’s but no one else in the family seems to take that concern as a serious issue. Unfortunately we don’t really have the space in our house to move her (and George in). I’m worried if she ever has a fall and then gets admitted to hospital and her legs are even weaker etc, they might deem her house as unsuitable to return to and end up putting her in a care home

 

[Sarasa]

Hi @CLau256, I think your grandmother might have declined without the stairlift. She can now get upstairs, at least for the time being. I don have a certain amount of sympathy about not wanting the major disruption of having a wet room put in. If you do manage to persuade them I think they would need to move out while it's done for everyone's safety. There is also no guarantee that it would be used for long. If your grandmother's mobility declines further even using a wet room without a lot of help would be tricky. Does your grandmother have carers coming in?
Don't dismiss care homes out of hand. I know now isn't an ideal time to move to a care home, but you might find your grandmother thrives if she did end up in one.

 

[CLau256]

Just an update I suppose, Grandmas mobility is just so bad. She can barely walk anymore. It took my Dad until 2pm in the afternoon to get her showered and downstairs today as she said she just couldn’t stand up anymore. Every night her partner keeps ringing for help to get her upstairs to bed and we can’t live like this anymore. My Dad & I spent two hours there last night trying to get her up to bed but she said she could barely get up off the sofa to stand and we didn’t get home until 11:30pm. She is either going to have to be all on one floor, either upstairs or downstairs. But since her partner rejected any need for amending the downstairs when I posted in January, she has no living facilities downstairs so it seems like we would have to leave her in bed all day. It’s just so awfully sad. I caught my Dad who is nearly 60 crying the other day because he’s just so upset about her memory loss.

 

[nita]

@CLau256 I have just been reading your thread and it is so sad but this is what happened to my mother. She always had trouble walking (arthritis) but could get around the house. She developed Alzheimer's in 2010/11. I had a stairlift fitted at the end of 2011 - I used the remote to operate it for her. She barely used it for a few weeks when she deteriorated even further. The OT who came out to visit said she needed to have her bed downstairs. I was in a quandary as we only have the one living room but decided she would have to sleep there. Her bed was moved downstairs. At that point she could make it to the commode but she declined in the next few months and the OT ordered a hospital bed for her. The furniture had to be re-arranged as, by then, we also had carers and they needed to get to both sides of the bed. She was then effectively bedbound which upset me a lot but the OT said she had to be hoisted. It's a long and painful story so I won't go into it all. The upshot was she had to have incontinence pads and four daily visits from 2 carers to change and turn her. I couldn't do it alone but I managed to keep her at home for over 3 years like this in familiar surroundings with her family around her. Carers visits are for half an hour at the most and the maximum is 4 times per day.
I am not sure your grandmother's partner would be able to attend to her needs (other than those duties provided by paid carers) such as preparing meals, being on call at all times, etc. My mother had additional needs (chronic pain) and I administered her medication throughout the day and night.

I think the first step is to get an assessment from the council of your grandmother's needs, including an OT assessment. Get this done urgently by ringing the council's social services department and selecting the adult care section. They may decide a care home is the best option or offer equipment and care visits. There will be a financial assessment and your grandmother may have to contribute to the costs depending on her finances. If she has to go into a care home, I am not sure about the rights of your grandmother's partner as he is living there and is presumably a pensioner, although he doesn't have any owner's rights. Otherwise, the home would be sold to pay for care.

Your Dad really needs to think about what would be best for his mother as she clearly needs more care and is in danger from falls. She needs her personal care needs attended to and it could be a care home is the best answer. I'm sorry to give this advice but you need to think seriously about it. It is such an upsetting time for you all - I have been through it myself.

PS Re your Dad crying and his age, I was 57 when my mother was diagnosed with dementia and it broke my heart.

 

[Starting on a journey]

@CLau256 if it’s any consolation I think installing the stairlift was a good move, albeit temporarily. My mum and mother in law who are mid dementia stage use theirs every day . However we installed them before dementia hit so maybe that’s why they have retained the ability to use them!
Your grandmother sounds in a desperate situation which is beyond the efforts of George to care for her. I can only echo @nita that help is needed and reorganisation downstairs or a care home. I have read on here of people having hoists and hospital beds as their mobility is so challenged.
It’s not what your gran or George want, it’s what your gran needs to happen that is important. Another day you and your dad are not going to be able to move her and then it will be an ambulance and hospital, so start investigating now.
I am so sorry for you all. All of us here have our own little problems which at times seem insurmountable but the thing I have learned from the many posts is that there is a time when a dementia sufferer needs the help of a team of people rather than an exhausted family. Try and find some time to relax if you can, especially your dad who has shed those carers tears that so many of us do on a daily basis

 

[CLau256]

Thanks all. We did have a council OT assessment earlier in the year but her mobility was okay at the time so we only got offered a few grab rails. She has been in hospital x2 already, once due to a fall but another when she got a bacterial infection in her legs. The ironic thing is when physio assessed her for hospital discharge both times she was able to get up on her zimmer & walk about and they declared her mobility as okay. I also have a camera in her living room connected to my phone and her partner was in the garden the other day and she had thought he’d gone out, so she was sat on the seat of her zimmer walker & claimed she couldn’t get up to move onto the sofa but I flicked the camera on and caught her getting up off the zimmer and getting to the sofa herself with no one around! We were slightly confused by that. It’s just upsetting because she can still hold a conversation with you, she might ask the same question 5 times but her brain isn’t completely gone so I think my Dad & his siblings wouldn’t want her to be put in a care home yet. The thing that gets be the most is that you just don’t know what’s around the corner or how quickly she’s going to decline.

 

[Jaded'n'faded]

I note you said back in January that she was becoming incontinent. Has that continued?

Now her mobility is going and she can't (or is refusing to) get up at times, I'm afaid I don't think it will be long before mobility goes completely and she becomes more or less bedbound. Obviously, that means she can't go to the toilet whether she's fully incontinent or not. Which means someone needs to be there to change her umpteen times a day.... How will George like that? A hospital bed, carers in and out all day...

I honestly think a care home would be a better solution for all now. Sadly she isn't going to get any better than she is today.

 

[Rosettastone57]

My mother in law was very much like this. Once her mobility became an issue, refusing to stand, incontinence, then these factors became a tipping point for full time care. I can't see any other option for your loved one other than a care home. I'm sure that's not what you want to hear.

 

[nita]

I think she needs a new assessment - January is a long time in terms of this illness. You said that her partner was calling every night for help to get her to bed and it is unfair to make her walk up the stairs if she finds it difficult for whatever reason. Have you thought that maybe she has another infection, perhaps a urinary tract one (UTI) as that can cause all sorts of problems. This is only a temporary thing but can be recurrent. Otherwise, the cause of her decline may just be the progression of the illness unfortunately. I think you need to act before the next crisis which may be as soon as tomorrow.

 

[CLau256]

Yes I think it might be a good idea for another assessment too. We do have the stairlift in so she isn’t having to walk, she struggles with getting up from the sofa or from the bed so we are going to get her a rise and recline chair for her living room. I thought the same about the UTI the day before you posted and I got her a sample pot from the doctors and it turns out she does have one.

the next stress we have is that her partner wants to go away to visit his children for a couple of days in august that live further down south - I may add, his children have rarely bothered with him apart from seeing him once or twice a year for the past 10 years and he barely bothers with his grandchildren. i’m away myself for nearly all of the days bar 2, my aunties working all day and my dad works night shifts so he can’t really help out either and my other uncle seems to be unbothered by the situation (he is one of those that seems to care more about his wife’s family than his own). so i am not sure what we are supposed to do with grandma when her partner goes away because ‘he needs a break’. He is adamant it MUST be those days (he’s always been awkward like this). I think the fact he wants to go away in the first place is awful, if you cared about someone you wouldn’t just go off for a week. He seems to not realise we all have jobs and think we just sit around waiting for him to ring and give us his next demand. I truly think he is selfish, he’s thought about things like he can’t go on his holidays anymore etc and live life like they used to and he just can’t be bothered anymore. He makes life difficult for himself - we constantly tell him the right way to do things such as how to move grandma about and help with her zimmer etc to avoid falls but he doesn’t listen and says he will do it “his way”. We bought him a dosset box for her tablets and said these are for the morning and these are for the night, but he doesnt listen and insists on giving her one at 9am another at 11am, then after lunch, 5pm and before bed etc. He then proceeds to complain about how he has to spend his whole day thinking about what tablet he has to give next! He doesn’t listen to anyone. He complains he is “so exhausted” yet i mentioned family members have helped her get up and to bed every morning and night for the past week, he just gives her the tablets and makes her cups of tea and lunch etc and does a bit of washing - which my grandma has done for him for the last 20 years!!! Magically he still finds the time in his day to go to the shops and buy a newspaper every day for a random old lady down the street. Sorry for my rant, as you can tell I feel a bit fed up. It’s breaking my family apart and I am so stressed - I’m only 25!