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How can I help my parents and still feel like their daughter (not the hired help!)

User
Posted 30 Jul 2019 at 13:54

Hi everyone

My Dad was diagnosed with prostate cancer in early 2016.  We learned early on that it was aggressive, and got the terminal diagnosis in December 2016.  He has undergone radiotherapy (which left him with a catheter for several months), chemotherapy and various clinical trials with varying degrees of success.  At some points I felt I was watching him die right in front of me, he looked so ill.  The cancer has spread to his liver and kidneys, and the latest is a large tumour in the lymph nodes at the side of his neck.  His chemo was stopped just after Christmas last year due to this latest tumour - a biopsy confirmed it is prostate cancer.  So far this year he has been hospitalised twice due to low sodium levels, and the doctors have no idea why or how.  He is permanently exhausted and has dreadful bouts of diarhoea which leave him unable to go anywhere, even if he had the energy or inclination to do so.

Mum has dementia which is getting progressively worse, and sometimes I'm not sure she really understands what is happening.  At other times, she is very much in the moment and is devastated, crying, full of worry that Dad may die.  They have been married for 57 years and I'm not sure either of them can imagine a life without the other.  My Dad's main worry is for Mum, not for himself.  He is fighting to stay with her.

I do my best to help them as much as I can.  Each weekend, I clean their house for them as neither of them are physically able to do it.  I make sure they have food shopping and anything else they might need.  I've been doing this for over 2 years now as there is only me to do it.  I'm so grateful that I'm fit and able to do this for them, but the down side is that I no longer feel like their daughter.  I'm the cleaner, the help.  I rarely have the luxury to sit down with them with a cup of tea, and just have a chat.  I miss just having time with my Mum and Dad.  I want to help them and be there for them as much as I can but I feel that time is running out for us.  Mum is not often 'Mum' these days, her personality is so altered, and I'm so scared that Dad is starting to finally decline.  I know that we are lucky as we've had 2 1/2 years since the terminal diagnosis - but it's never enough, is it.  

How can I help them, support them, yet somehow become their daughter again?  I visit as much as I can but with a full time job, husband and teenage son, it's a constant juggling act.  Whenever I visit there is always something to do or shopping to get for them, which eats into valuable time with them.  Dad stubbornly refuses online grocery shopping, even though they will deliver it right into the kitchen for them.  They wont even contemplate getting a cleaner in - I've only just managed to get Dad to agree to me getting quotes from a couple of gardening firms to cut the grass and hedge for him.

I just want to make the most of the time I have left with them, to talk with them, share memories and stories. Friends keep telling me life will get easier but right now, I just can't see how.

User
Posted 30 Jul 2019 at 14:16
Does dad have access to a macmillan nurse or local hospice team? Both services usually have someone skilled in assessing additional needs and will know whether social services and or health services should be providing support. You could also apply to social services for a carer's assessment. Ideally, you need someone who can come in to do the tasks so that you can just visit and enjoy.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Jul 2019 at 17:30
I really feel for you having been in a similar position a few years ago. I left my family every other weekend to care for my Mum but we did put in place a care package of three visits a day when I wasn't there as well as a night carer to keep her safe. She also had a cleaner once a week who was local and known to her so she was ok with that once she got used to it. This meant I could take her out when I was there so she could choose some of her own food and we could chat and sit together when the basic personal things were done. She cared for my Dad with very little help for twelve years so although it was a hard time I tried to still be a daughter and not another carer. We shared a passion for the garden and she would sit with me while I cut the grass or weeded. Try to do the essentials but make yourself just be with them even if only for half an hour. This stage doesn't last forever but better a bit if dust than that feeling you are losing your special relationship. They may accept outside help as things change. Good luck.
User
Posted 31 Jul 2019 at 23:55

I don't know your family and how it works but I'd ring Social Services and ask how someone can come in to do an assessment. You should at least make them know. They won't come if the they won't let them in. 

 I'd also ask what conditions are needed to get help next time your father goes into hospital.  Getting out of hospital is a vulnerable moment.    I don't think any public body would go in with any deception but you need to make your case well.

You also have to be careful as it might be too much if it all happens too fast.  On the other hand if you don't get help you might think back and wish you had as people will come in when it's too late.  Life is like that, an end appears and you think back on what else you could have done.  It sounds like you're doing all you can now so you hopefully won't be too bad.   So if I was you I'd try and fix it up with their agreement for when you're on holiday or ill for starters and perhaps pay any bill due if it they turned it down on the day.  If you can it might be better to be there even though you aren't feeling so good.  It might not work and you might need to try a few ways.

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User
Posted 30 Jul 2019 at 14:16
Does dad have access to a macmillan nurse or local hospice team? Both services usually have someone skilled in assessing additional needs and will know whether social services and or health services should be providing support. You could also apply to social services for a carer's assessment. Ideally, you need someone who can come in to do the tasks so that you can just visit and enjoy.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Jul 2019 at 17:30
I really feel for you having been in a similar position a few years ago. I left my family every other weekend to care for my Mum but we did put in place a care package of three visits a day when I wasn't there as well as a night carer to keep her safe. She also had a cleaner once a week who was local and known to her so she was ok with that once she got used to it. This meant I could take her out when I was there so she could choose some of her own food and we could chat and sit together when the basic personal things were done. She cared for my Dad with very little help for twelve years so although it was a hard time I tried to still be a daughter and not another carer. We shared a passion for the garden and she would sit with me while I cut the grass or weeded. Try to do the essentials but make yourself just be with them even if only for half an hour. This stage doesn't last forever but better a bit if dust than that feeling you are losing your special relationship. They may accept outside help as things change. Good luck.
User
Posted 31 Jul 2019 at 23:55

I don't know your family and how it works but I'd ring Social Services and ask how someone can come in to do an assessment. You should at least make them know. They won't come if the they won't let them in. 

 I'd also ask what conditions are needed to get help next time your father goes into hospital.  Getting out of hospital is a vulnerable moment.    I don't think any public body would go in with any deception but you need to make your case well.

You also have to be careful as it might be too much if it all happens too fast.  On the other hand if you don't get help you might think back and wish you had as people will come in when it's too late.  Life is like that, an end appears and you think back on what else you could have done.  It sounds like you're doing all you can now so you hopefully won't be too bad.   So if I was you I'd try and fix it up with their agreement for when you're on holiday or ill for starters and perhaps pay any bill due if it they turned it down on the day.  If you can it might be better to be there even though you aren't feeling so good.  It might not work and you might need to try a few ways.

User
Posted 04 Sep 2019 at 13:28

Thanks everyone - sorry for the huge time gap in responding.  The day after I posted this message, Dad told us he had been given between 3 to 4 months to live.  One week later he was pretty much confined to bed and his life expectancy had drastically shortened to only 1 to 2 weeks.  3 weeks on he is still hanging on but it's excruciating to witness - up until Monday we were caring for him at home, but on Monday morning he had a bad fall in the bathroom at home (my Mum helped him to get there, then left him on his own - but I know I can't get mad at her, because her own illness is affecting her behaviour).  We had to call an ambulance for him as he was in such pain we were frightened to move him in case we hurt him more.  He has been on a morphine driver for the past 10 days or so, and his appetite has been poor - in the last couple of days he's not eaten anything at all.

My heart is breaking every time I see him, he is exhausted and in so much discomfort.  I wish for his sake that he will pass quickly now, he has no quality of life any more and no dignity left.  This is just so cruel, I hate watching him suffer.  My fear now is that he could continue like this for weeks.  It's wicked.

User
Posted 04 Sep 2019 at 17:45
His suffering shouldn't last long now, my dad went the same way. Just make sure whoever is managing the syringe driver doesn't skimp on the drugs - he should not be suffering at this stage of the game.
User
Posted 05 Sep 2019 at 08:58

Thanks.  He looked dreadful last night, could barely keep his eyes open. I realise it's just a matter of time now - for his sake, I hope he doesn't have to suffer for too much longer.

User
Posted 05 Sep 2019 at 16:31

Thinking of you at this sad time. I am so sorry .

User
Posted 05 Sep 2019 at 17:42
I am not sure how much information you can take but I am hoping that what the medics told me when my mum was dying will give you some comfort & reassurance. They said that nature is very clever and when someone is getting to the final stages, the brain tells the body that it no longer needs food; eventually, the brain also tells the body that it doesn't need to drink anymore either. Dehydration and malnutrition triggers a naturally produced pain relief; the brain also starts to close down so although someone may look like they are in pain, they don't know it.

Sadly, nature doesn't have any natural pain relief for the family & friends who are witnessing the loss of someone they love. You are in my thoughts.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Sep 2019 at 23:11

Thanks everyone. As I type this, I'm lying on the floor at the end iof Dad's bed, listening to his breathing and ready to help if he needs me. The doctor told us on Thursday it would be only a few days and that we should be with him round the clock. Watching him slowly die is killing a part of us but I know we are so lucky to be able to be here and help him in these final days. 

 
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