General moan

(3 Posts)
user1465146157 Thu 08-Aug-19 22:10:02

Just checking in on anyone else out there who has a parent with this terrible disease.

My mum looks after my Dad who is in what I would call 'late' stages, but actually not sure what late means. She is having an awful time, pretty much housebound herself because of his illness. We have people come in twice a week (for 30 mins) to give him a bed bath. I can't visit as much as I'd like - and she can't leave the house.

Going to the bathroom has become a problem - and while we are in the process of increasing days for bed baths, you can't schedule the bathroom (as one website advised we try to do...) so it sometimes feels like such a waste when he's been bathed and then needs to be cleaned again after the nurse has left.

I feel like any advice we get just can't apply to our case.

'Put him in a home' - not something we want to do as we know he's a particular patient who wouldn't survive long away from home, plus even if we could, who can afford this without selling their own house?

'Get more help' - good help is hard to find and expensive. I've been so frustrated dealing with some of the staff who do the bed baths - either not very thorough, or understanding, or some have made insensitive comments. To be fair most are very good and patient so grateful for that, but it's so hard to accept strangers in the home.

'Take them out for walks' - my dad is in such a stage where he really can't leave the bed never mind go outside

There just seems to be little we can do except wait for him to die - sounds so awful to even type that, but it's literally his only way out of this. My mum clearly feels trapped and her health is suffering because of this. She has a nurse come every THREE weeks for THREE hours, which she waits for patiently and uses as a chance to go to the shops. Is this a normal way of life? I just don't think it is. How are other people coping? With little extended family around I just don't know how people deal with situations like this - my mum is literally living a Groundhog Day.

And then of course outside of the difficulty of every day life with this - there is the extreme sadness - the mourning of a person who is alive but already gone. He's not the same person - and he looks so miserable at times it is heartbreaking to see.

Not sure if I'm asking for advice or just ranting here - I know there's no answer to this. Just sick of reading websites where certain pieces of advice aren't realistic to everyone's way of life. I've rang charities for help or a chat and while well meaning, they do not help.

I can't describe it but it feels like our situation is so bespoke that no one could understand - I'm sure thats not true and lots of people are going through the same thing, but it's a very lonely time and if I feel it, not living there, I have no idea how my mum must be feeling.

Love to anyone going through similar situations - hoping for better days.

OP’s posts: |
MereDintofPandiculation Fri 09-Aug-19 09:33:52

You seem to be having a dreadful time and managing on a horrifying small amount of help. Did you source the help or go via social services? Either way, it seems your Dad is over due for an assessment of needs?

Think hard about the home. Late stage dementia isn't really manageable by a single carer. The value of the property isn't taken into account in the financial assessment as long as your mother remains living in it - Age UK has a useful factsheet "paying for care in a care home if you have a partner".

Medievalist Tue 13-Aug-19 15:00:53

'Put him in a home' - not something we want to do as we know he's a particular patient who wouldn't survive long away from home, plus even if we could, who can afford this without selling their own house?

And you want to prolong his life why exactly?

Sorry if that sounds harsh. I watched my dm struggle with dementia for the last few years of her life. If I get dementia, I wouldn't want anyone prolonging my life. I also wouldn't want to drag my loved ones into the dementia pit with me more than I had to.

My dm had to go into a home due to dementia and spent 2 years there before she died. I couldn't look after her (dcs, job and lived 250 miles away). Dsis couldn't look after her because she was in poor health herself.

The care home my dm went into was good. The majority of people in there had dementia and the staff were very good with them. They understood dementia and how to cope with the many ways it manifests itself. They knew how to soothe people when they were distressed and could be objective in a way that relatives rarely can. They dealt with the person in front of them and weren't trying to reach the person they used to be.

If you find somewhere nearby, your dm can still visit every day (my dsis did). As the pp says, your dm won't need to sell. The local authority will likely put a charge against the house to be redeemed when it is sold. Don't forget that any pensions your df has will also help reduce the cost.

In your shoes I would now start looking at care homes - at least just in case. Make sure you know what is available, so if you have to move quickly you can.

My dm's dementia didn't really manifest itself until she was admitted to hospital for something unrelated. (Although with hindsight there were signs). She spent about a month in hospital going downhill mentally very rapidly. She lost her already limited mobility very quickly so was put on a physio ward to see if she could regain it (no attention paid to her mental health during this period). Then, when they'd got her moving again, they realised she needed to go into a mental health ward where she promptly lost her mobility again (no joined up thinking in that hospital hmm).

All the time this was going on it was with a view to her going home where they were optimistic she would be able to manage with some additional care. This was always the response whenever we tried to discuss things with drs. Finally we had a meeting and were told dm had dementia, wasn't able to care for herself at all and had we found somewhere for her to go as she was about to be discharged. When we said we hadn't as this was contrary to everything they'd been telling us, they graciously gave us 3 days to find somewhere. Cue mad dash around all the care homes in the area. Thankfully the right one had a vacancy.

Sorry, that was a bit long-winded, but with hindsight we'd have had back up plans in place. So I think you really do need to look into options for care homes in case your df declines suddenly or your dm becomes ill.

You have my every sympathy. Dementia is horrendous. Seeing the parent you've loved all your life look at you with blank eyes because they don't know who you are - well, words can't describe it.


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