When to move a parent into a care facility

[PRGirl]

Things have got worse with my family with my overseas brother hurling abusuve Shane On Us emails and banging on as usual about money which I personally feel is his main motivation. One aunt is fantastic and the other doesn’t speak to her sister or me. Mum is not terribly happy and recently with lockdown doesn’t understand why no one can visit. She remembers nor understands much. She says she is lonely but before lockdown I visted 3 times in a week and she did not remember any visits. She doesn’t remember any phone calls or about the virus. The home says she is happy most of the time but when she speaks to me it is all so negative . My aunt the good one spoke to her today and she was asking why she couldn’t live with her. She thinks I am on holiday all the time it is so mad I wonder if Phoebe calls make it worse . Can’t sleep as my aunt gave me chapter and verse about her call today. Should I just stop calling and call the home to check she is okay and not speak to her as it seems pointless

 

[Louise7]

Should I just stop calling and call the home to check she is okay and not speak to her as it seems pointless

Yes, as the calls are not helping either you or your mum then I think it's better just to speak to the home. During lockdown I've been sending mum cards for the staff to read out to her so perhaps that might be an option for you?

 

[Pete1]

She says she is lonely but before lockdown I visted 3 times in a week and she did not remember any visits.

Hi @PRGirl, Mum is living in the moment - so it is how she is feeling at that second, it would be the same if you visited every single day. I agree with @Louise7 it doesn't sound like the calls are beneficial to either of you - it can be really difficult for a loved one with dementia to communicate through via the 'phone. Have you thought of writing to Mum - perhaps enclose copies of some old photos? It must be an incredibly difficult time for you not being able to see her. Stay strong. All the best.

 

[canary]

I agree with @Pete1 about her living in the moment.
I remember when my MIL was in a care home and OH went to visit her. He met his brother at the front door - the brother was just coming out from visiting his mum and helping to feed her as OH was going in. When OH got to his mums room she was complaining bitterly that no-one ever came to see her, she was locked up in her room and she never even got any food.
In the few minutes between one of her sons leaving and the other one arriving, she had totally forgotten the visit.

 

[Sirena]

I agree with the other posters. The calls are making you both miserable, so it would be kinder to stop calling. I call and talk to the carers to check my mother is okay (although they'd call me anyway if she wasn't) but I don't speak to her.

Your mother is safe and as content as it's possible for her to be within the confines of the illness. Other family members sticking their oar in evidently have little understanding of dementia and are just unloading their own feelings onto you. You don't have to take that burden, they are their feelings for them to deal with.

 

[PRGirl]

Yes, as the calls are not helping either you or your mum then I think it's better just to speak to the home. During lockdown I've been sending mum cards for the staff to read out to her so perhaps that might be an option for you?

That would work if it was perhaps someone else but she seems unable to process much these days and when I take cakes and treats and leave them for her she is never aware and thinks someone has taken them. She seems quite paranoid and negative

 

[PRGirl]

I haven’t posted for a while but my Mum has been in residential care for more than a year now. Lockdown caused problems but the home is wonderful and the staff so
Kind to Mum and me. About 10 days ag she had a seizure and was hospitalised for two days. Since then she is barely eating and mainly things I take like custard and creme caramels. She is still drinking if prompted but yesterday slept for most of the day. I visited last night and gently tried to wake her to no avail. She has Mixed Dementia with Alzheimer’s and for some time has not really been processing much language or responding with right responses. The hospital sent a hospital bed for her and they are organising a palliative care team. I am not really sure what to expect now as no one can really answer my questions . The hospital told the home that she is in terminal stages but again I understand the language but has anyone else experienced this?

 

[canary]

Hi, @PRGirl
Im sorry to hear about your mum, although Im glad that the home is wonderful and the staff caring. My mum was in a similar care home until she passed away.

Im guessing that you understand that your mum is at, or nearing, end of life.
When someone with dementia dies from the dementia what happens is that the body shuts down slowly over days, weeks, or even months. Their food and fluid intake reduces and eventually stops completely as the body can no longer process it. They also sleep more and more and eventually pass into a semi-comatose state. There are other physical changes that happen right at the end that will usually alert the carers that the end will be very soon.

I suspect that one of the things that you want to know is how long your mum has, but Im afraid that there is no real knowing. All the while your mum is eating and drinking (however little) it could go on like this for several months. On the other hand it may progress within a few days. Even when she stops eating and drinking completely this can go on for longer than you might expect - mum went 17 days with absolutely no food or fluid at all. Sometimes they get to this stage and then rally! I was told three times that mum was at end of life, only for her to start eating and drinking again!! It happens more often than you would think, but dont rely on it. Some people only go for a few days with no food or fluid before they pass away.

I hope this is helpful. If you have any other questions I will answer as best I can
Dont forget to look after you during this time
xx

 

[PRGirl]

Hi, @PRGirl
Im sorry to hear about your mum, although Im glad that the home is wonderful and the staff caring. My mum was in a similar care home until she passed away.

Im guessing that you understand that your mum is at, or nearing, end of life.
When someone with dementia dies from the dementia what happens is that the body shuts down slowly over days, weeks, or even months. Their food and fluid intake reduces and eventually stops completely as the body can no longer process it. They also sleep more and more and eventually pass into a semi-comatose state. There are other physical changes that happen right at the end that will usually alert the carers that the end will be very soon.

I suspect that one of the things that you want to know is how long your mum has, but Im afraid that there is no real knowing. All the while your mum is eating and drinking (however little) it could go on like this for several months. On the other hand it may progress within a few days. Even when she stops eating and drinking completely this can go on for longer than you might expect - mum went 17 days with absolutely no food or fluid at all. Sometimes they get to this stage and then rally! I was told three times that mum was at end of life, only for her to start eating and drinking again!! It happens more often than you would think, but dont rely on it. Some people only go for a few days with no food or fluid before they pass away.

I hope this is helpful. If you have any other questions I will answer as best I can
Dont forget to look after you during this time
xx

 

[PRGirl]

Thank you for your reply - I suspect this is the case but as with many people this is so new to me and I feel quite jittery about the whole thing. Mum is very peaceful but when I called the home this morning she was still sleeping and had slept most of yesterday too. It's an uncomfortable time and feeling which I am sure many have also experienced.

 

[PRGirl]

Following my mums seizure about 2 months ago she lost most speech and appetite. She is not able to walk but recently I have been asking the home to leave the TV on with subtitles. Mum sits and reads the subtitles and it is hard to distract her. In the past couple of weeks her language and cognitive ability seems to be improving and she answers questions correctly e.g How are you? Oh I’m ok! It is very strange as her ability seems improved from pre seizure. She is eating a little more too so the whole thing is very odd. Her mood is also worse and she almost seems annoyed. She will the also smile but it is as if her brain or a different part is taking over. Is this normal.