Vascular dementia and now a stroke

[Mobbin17]

My Mum was diagnosed with vascular dementia just into lockdown, so every problem is already magnified. On 1st August, we called 111 as Mum was clearly unwell . An ambulance was sent , and as my husband and I had suspected Mum had suffered a stroke . August has gone and Mum is still in hospital, care is good , though sometimes the communication is not the best between some of the staff . Mum can hardly speak , has not been able to stand yet , is eating soft food and slightly thickened water etc , has a catheter in . I have been told that medically she is almost ok now . What is now needed is some inpatient rehab so that physio, speech and occupational therapists can do some work . The physios are quite keen , one doctor is too . Today a different doctor mentioned this to Mum , she said that she wants to come home and doesn’t want rehab . He told her that it is up to her , no one will make her . What do I do ? Don’t misunderstand me , I want her home . I do realise that no amount of therapy will turn the clock back . I am terrified of her coming home and not being able to meet her needs .

 

[karaokePete]

I'm sorry to read about that and hope that things improve for your Mum and the family.

I wonder if the hospital has a Social Worker who may be able to help, even if it's just a matter of getting some sort of care package arranged before discharge.

 

[Sarasa]

Hi @Mobbin17 and welcome to Dementia Talking Point. I'm sure other's that have been in this situation will be along with more advice in a moment, but it sounds like what is needed is a meeting to decide what your mother needs rather than what she wants. I'm sure she wants to be home, but it sounds that with out a lot of input you'd be struggling to meet her needs.
I wonder if a look through these pages from the Alzheimer's Society may give you give you some idea of what help may be available.

 

[canary]

I am terrified of her coming home and not being able to meet her needs .

I think this is a very valid fear.
Unfortunately it is very common for people with dementia to not comprehend the extent of their problems. My mum was convinced that she could go out for long walks and run up and down the stairs when, in reality, she could barely shuffle around using a zimmer frame. There is also the point that if you ask someone with dementia if they would like to do something, the default answer is almost always "no", because they do not understand what they are being asked.

Would she going back to her own home, or back to yours? If she had been living with you, you can refuse to have her back. Either way, I think you need to find the hospital SW and tell her, very firmly, that you will be unable to meet her needs if she is not mobile.

A lot of what happens next depends, I suspect, on whether she is considered to have capacity or not - and this can be a very slippery thing. Do you have POA for Health and Welfare? If you do, I think this will help considerably. As @Sarasa says, whet she really needs is for the doctors to decide what she needs rather than what she says she wants

 

[Duggies-girl]

Hi @Mobbin17 We has a similar experience in 2019 with dad. He spent three weeks in hospital with pneumonia and also a heart attack, a stroke and 3 falls. An awful experience for all of us. I felt like you that I would not be able to cope with dad if he came home but he was having such a terrible time in there that we had him home anyway.

I did cope with a lot of help from my husband but it was a 24/7 job and quite frightening at times because dad's mobility was dreadful although it did improve eventually. In hindsight dad should have gone into a care home (where I believe he would have been quite happy) but I was pressurised by other family and offered lots of help that wasn't sufficient in the end and I had a year of living with dad in what was not ideal circumstances. It was extremely stressful for me looking after dad and I had no life of my own. Dad was happy though and had no memory of his hospital stay.

I would question whether that doctor has the right to tell your mum that, especially if she is living with you and if she is living alone how would he expect her to manage. There needs to be a proper assessment before these decisions are made and you need to be considered.

Believe me it is very hard to care for someone full time and my dad was a sweetie but I was often close to tears and I really don't know how I did it but if he had gone into a care home I would probably have regretted that too. Sometimes you just can't win whatever you decide to do.

I think that you have got to consider your own well being here, If your mum is happy enough in the hospital she will probably be just as happy in a care home.

 

[jennifer1967]

i agree you need assessment what the mum needs who will be doing it what support will you have. where would rehab be and could you take her and show her or rather the hospital show her as your mum probably doesnt understand and is scared about this new lot of information and could conjure up different memories of historical rehabs buildings and they might be different from todays.after all information collected together think about in your own time and without guilt and realistically. take time

 

[Mobbin17]

Thank you all very much for taking the time to reply . I will let you know what happens next x

 

[Weasell]

Please read @Grannie G compassionate communication.

https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

I would be saying I would love her home but I had just found out we have no hot water and the part from the boiler is only available from China, if I am not able to be patient and wait it will cost me two thousand pounds for a new boiler.
Or I have just started to have weird stomach pains and find myself unwell, weak and unable to care for myself, let alone anyone else.
Basically I would be singing any song to get her into rehab.

If you take the rehab place the she have access to physio care, they will come up with a plan to optimise recovery.
The team will evaluate the catheter and if there is any way she can manage without one that will be made possible.
By the time discharge is considered several different monitoring plans will have been in place and they will have a considered view of her future care requirements.

 

[mumhasdementia]

Hi my mum was the same after her stroke, wasn't aware of the severity of her situation. She also had dementia before the stroke. She was a month in the hospital, mostly in bed or wheelchair, couldn't walk , but she wanted to go home. I insisted that she went to rehab. She had intensive physio for a whole month however even after a month she could hardly stand up and walk only a few steps with a zimmer frame. Your mum will have to have intensive physio no question about itand probably longer than a month before going home. I wish you good luck!

 

[nae sporran]

Hi my mum was the same after her stroke, wasn't aware of the severity of her situation. She also had dementia before the stroke. She was a month in the hospital, mostly in bed or wheelchair, couldn't walk , but she wanted to go home. I insisted that she went to rehab. She had intensive physio for a whole month however even after a month she could hardly stand up and walk only a few steps with a zimmer frame. Your mum will have to have intensive physio no question about itand probably longer than a month before going home. I wish you good luck!

Welcome to the forums mumhasdementia, sorry your mum has so many physical struggles as well as her dementia. Good to see have already found your way around, and you will certainly find help and advice for yourself when you need it.