What Would You Choose?

[Chemmy]

This is very much how I feel about this. Having spent the last few years going through this with my dad and still being in my 20s, I'd be lying if I said (like others I'm sure) I don't mourn the life I could otherwise have.

Having only just turned 61 and being in good health otherwise, my dad could well live for decades yet.

The last 18 months - 2 years have been hell and the thought of going on for even one more year is soul destroying. I haven't been able to mourn my mum who passed 18 months ago, I've lost a good career and my social life is pretty much non existent.
I know this sounds selfish, but I very much would like my own life. Having spoken about this in light of his own mother's dementia, I know my dad wouldn't have wanted this.

I'm actively looking into good care homes and also pursuing CHC funding.

Has anyone faced negative opinions from friends and family about full time care?
Some friends seem to think no matter what my dad should stay at home They hear the tales of violence, incontinence, anxiety etc and say "it's tough", "you're doing well" yet shriek at the thought of full time care. One friend even suggested that in another 10 years, everything would be ok - I don't know what she thinks will happen in 10 years' time that'll remedy this situation. With all due respect to other people's ages on this forum, I'll be close to 40 in ten years' time and if the situation stays the same, I'll have spent over a 3rd of my life caring for my dad by that point.
If CHC funding doesn't work out for him, at least he has assets to pay for his care; if I spend the next 10 years as a carer, I won't have a penny to retire on, let alone pay for my own care should I need it.

I don't want to be so asinine as to suggest that people who have never faced a situation like this shouldn't offer their points of view. But I find it difficult to put up with people who haven't even asked what day to day life is like, (or, shock horror, contemplate that full time care might be better for the PWD) yet remain so dogged in their belief that family should always do it.

Re Medication, it's been a huge help to my dad to help control his violence, anxiety and depression. Though it needs a review as his day centre have asked that he not return until he's seen the mental health team after yet another violent outburst.

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lhtl, my children are just a little older than you. I would be horrified if I thought they were giving up their life for me. Take no notice of your no doubt well-meaning friends. Find a good care home for your dad.

 

[Witzend]

This is very much how I feel about this. Having spent the last few years going through this with my dad and still being in my 20s, I'd be lying if I said (like others I'm sure) I don't mourn the life I could otherwise have.

Having only just turned 61 and being in good health otherwise, my dad could well live for decades yet.

The last 18 months - 2 years have been hell and the thought of going on for even one more year is soul destroying. I haven't been able to mourn my mum who passed 18 months ago, I've lost a good career and my social life is pretty much non existent.
I know this sounds selfish, but I very much would like my own life. Having spoken about this in light of his own mother's dementia, I know my dad wouldn't have wanted this.

I'm actively looking into good care homes and also pursuing CHC funding.

Has anyone faced negative opinions from friends and family about full time care?
Some friends seem to think no matter what my dad should stay at home They hear the tales of violence, incontinence, anxiety etc and say "it's tough", "you're doing well" yet shriek at the thought of full time care. One friend even suggested that in another 10 years, everything would be ok - I don't know what she thinks will happen in 10 years' time that'll remedy this situation. With all due respect to other people's ages on this forum, I'll be close to 40 in ten years' time and if the situation stays the same, I'll have spent over a 3rd of my life caring for my dad by that point.
If CHC funding doesn't work out for him, at least he has assets to pay for his care; if I spend the next 10 years as a carer, I won't have a penny to retire on, let alone pay for my own care should I need it.

I don't want to be so asinine as to suggest that people who have never faced a situation like this shouldn't offer their points of view. But I find it difficult to put up with people who haven't even asked what day to day life is like, (or, shock horror, contemplate that full time care might be better for the PWD) yet remain so dogged in their belief that family should always do it.

Re Medication, it's been a huge help to my dad to help control his violence, anxiety and depression. Though it needs a review as his day centre have asked that he not return until he's seen the mental health team after yet another violent outburst.

You are not remotely selfish to want your own life, and I'm sure your dad's former self would not want you to give up your life at such a young - or indeed any - age, in order to care for him.

I certainly had some very scathing comments when it was time for my FIL to go into a care home - it was so selfish of me, etc. People can be very pious about it, but it's nearly always people who don't have a clue what it's like to care for someone with dementia 24/7, and who think all care homes are the hellholes that occasionally feature in the media.
In particular a younger sister of FiL's who thought I should give up my life, and had said awful things behind my back, insisted that we place him in a CH very close to her, and as it happened the best we found by far for his particular needs was extremely close to her flat. She began bringing him over for tea every day, but very soon found even that exhausting, so stopped it. However the CH was not a secure one, and having found out where she lived he took to going every day at teatime anyway. And I very soon had her on the phone saying, 'I can't cope! He's driving me mad!' etc. I said, 'Well, perhaps now you realise what is was like for me, ALL day, every day.' She never apologised for calling me selfish, but at least she finally understood.

When it came to my mother, there were no comments from anybody, but by then all my siblings knew exactly what is was like, and if anybody else had objected, we would have asked them if they'd like to take over 24/7. If not, keep your nose out.

I would never wish dementia on anyone, but I've often wished that those who make pious comments and call us selfish and uncaring, and say that it's only us nasty Brits, in other countries people look after their own (simply not true) would have their eyes opened by experience.

 

[Chemmy]

Going back to the original question "What would you choose?:

What if your choice (for example to remain at home even when you can't look after yourself) has a severely negative impact on the person who has to look after you? Don't they deserve a say in it too?

"I don't want any medication" might sound like a principled stand - but if it's the carer who then has to deal any fallout, like aggression or violence, is that fair?

A person's choice, especially if it's made by someone whose condition means it's not an informed choice, can't be made in isolation.

 

[Missy]

Well said, Chemmy, I completely agree.

 

[Witzend]

Well said, Chemmy, I completely agree.

Me too.

 

[theunknown]

Hi Ed. Although I agree with a lot of what you've said, I part company on the use of anti-depressants. I'm on a long-term 'maintenance' dose. I think if I hadn't finally given in and accepted I needed to be back on them I wouldn't be here now. They certainly haven't turned me into a 'zombie'. Sometimes I wish they could.

I do agree with you that the use of them shouldn't be automatic in dementia. Dementia doesn't necessarily equate with depression.

 

[Pickles53]

Well said, Chemmy, I completely agree.

Could not agree more. The carers' rights and feelings are just as important.

 

[BR_ANA]

Ed. I am on anti-depressants for decades, and for decades before I refused them.

I feel I was like a zombie on a roller coaster. Depression made my mind work like a computer with virus. I had difficulty on focus my mind. All I wanted was stay in bed or die. I had quit brushing teeth. I reacted badly to any problem on my work. (If I had career for my mother without my pills probably I would have killed myself)

Now, with anti-depressant I still need strength to get out of bed, but is less than before. My toughs are clearer. Now I even floss daily. I can control myself to not be aggressive to workmates, so I can choose a reaction ( instead of an auto attack reaction).

About dementia and anti-depressant: my mum had a very low dosage. Her doctor explained that she was feeling something was wrong on her mind and that (half of minimum daily dose) was to make her a bit more confident, so she would be lest shy of her problems. So all she had was blood pressure pills, and citalopran and rivastamine. ( later citalopran was changed for other which side effect helped her sleep ). Now she is just on blood pressure pills.

In case of your mother it seems she didn't have a good doctor. A good one wouldn't let her so drugged. A good one would have choose what was better for you and her and not what drug industry said.

 

[theunknown]

Brana, I understand what you're saying. The smallest things can seem impossible. How on earth do you cope with emotional problems that are difficult for the strongest of people? You have to take the help that is there. I don't take anti-depressants because they give me a lift (they definately don't), I take them because I probably wouldn't be here without them. I've tried other things, such as CBT, but I definately need medication to lift my mood levels. The problem is that without outside help you can carry on and cope, and than it'll take the smallest thing to send you over the edge. It's best not to put yourself in that position.

As an aside, I did myself a bucket list about two years ago, whilst I was going backwards and forwards to hospital (everything turned out to be fine, I just needed a common operation). This was before my mum was sectioned and went into a care home. I'm putting it here because it cheered me up, but obviously I understand that it may not be appropriate and may be deleted. (Oh, and it's only got five things on it.)

. Slap an owl on the back of the head.
. Squeeze a Chihuahua's paws.
. Tell a cat the he smells of dogs.
. Ask a Labrador why he's so fat and dismiss his reply with a shrug.
. Suggest to a cat that we'd all like him more if he was ginger.