Thoughts I need to unload - sorry

[gondrinkin]

I posted earlier with a query about my mum. It got me thinking about lots of things. When the phone rings I wish it was the worst news. She is in near constant pain, her body no longer works and the mind is following (parkinsons dementia).

I feel a sense of frustration, anger, and resentment, and here is the worst bit, some of it is directed towards her, that she won't die, that she may linger like this for years, how could she do this to us? getting so old and decrepit, awful, angry, selfish thoughts.

God, I just realised I'm writing this on a Saturday night, but I needed to get it out.

Thank you for reading.

I’m in a similar situation.

For anyone concerned about their own future, or needing to talk to a parent about theirs, there is help to record what intervention you do/don’t want. Saw this talked about by a palliative care doctor, Dr Rachel Clarke:

Advanced care plan/living will:
compassionindying.org.uk/making-decisions-and-planning-your-care/planning-ahead/advance-decision-living-will/

www.dyingmatters.org/overview/resources

I keep putting off doing my own...

Sparkling mums done all of that. I still don’t know how to assuage the fear of her living to 90. Or worse.

When my father died, after a long drawn out illness (Lewy Body possible the same as your mum) all I felt was relief, I was happy. When my dog died suddenly I was heartbroken and cried for days. I still feel bad about this but he wasn't living just existing.

Seeing all these elderly people in care homes on TV makes me dread getting to that state. I don't want to be kept alive for the sake of it with loads of medication.

I totally sympathise with everyone on here, My mother is in her eighties and s...l...o....w....l...y failing. She is still just about able to live alone but it’s borderline as she physically deteriorates.

Like others on here, I can see her lingering on for years more getting frailer and frailer and more and more needy as she is less able to get the attention social stimulus she craves. Mentally she is not too bad, utterly self-obsessed but always has been, but I can hardly bear to think about the next few years...

Hardly bear to think
We try not to look at it but we know it's there, either we distance ourselves and let them fail or we allow ourselves to be drawn in.... With all that goes along with that

I really don't know why they do that. I mean yes sometimes it's because outcomes are more variable than you think, and sometimes it looks like a breakdown in communication (Dr A has broken the news that the kidneys are shot and this is it, meanwhile Dr B gets the rehab physics in, who were a delight might I add, and Dr C orders a scan to check for myeloma. As I believed Dr A and mainly the activities provided a distraction I let them get on with it...)

*physios

Hi all

Its interesting (and even I daresay heartening) to see others have felt the same way as me. My mum has end stage parkinsons, she's had 2 falls (off the loo noless) in 2 weeks. Fortunately my mum and dad have very understanding neighbours as my Dad can no longer hoik her off the floor. This morning the male neighbour had to come over to get her up, she was on the bathroom floor, with her knickers down covered in wee.

I think part of my anger and annoyance/resentment stems from fear that that could be me in 30 years. It's also in part due to the fact that they have moved about 5 mins down the road from me (they were 300 miles away till 5 years ago). Basically as the youngest daughter (2 brothers, 2 sisters), I was chosen as the one who would 'look out for them in old age'. That really gets my goat. I do get on with them but they have a closer relationship to DB2 and my DSIS, so why me? Now to be fair, they have never asked for much and have the money at the moment to pay for all their care visits but, I dread being roped into doing any kind of personal care or worse still them mentioning moving in with me.

Anyway, please feel free to vent away with your thoughts too.

Also, whilst my dad is a healthy 90 year old I fear we may have to go through this twice.

“ That really gets my goat”

Not surprised, they basically lumbered you with it, or tried to.

How often do carers come in? I’m afraid it sounds to me as if your mum might need to go in a home or have round the clock care?

I think you need to get involved as little as you can or you’ll end up as the carer.

Be ready to refuse if they want to move in with you.

I was chosen as the one who would 'look out for them in old age
so a plan was made for you without your knowledge or consent, you dont have to follow along with that you know
they have a closer relationship to DB2 and my DSIS, so why me?
becuase they are the 'good' ones and they should not be soiled by having to do the menial task of elder care, they want you to be the donkey and do the donkey work so that they can maintain a close supportive relationship with the other 2.
It's a strategy designed to get them the best outcome possible.

5 mins down the road is scary, I suggest you start having health issues or some intractable problem which makes you unable to help them, be as flaky as you can, be impossible to pin down. Polish up your feigned incompetence routine

You're right about the care homes Lilac, they currently have 4 care visits a day but I don't think that's enough now. We have been discussing care homes, and I have actually already done some visits, I found it a pretty grim experience, the care homes were nice enough but the idea that care homes are full of smiling, knitting grannies (or whatever) is rubbish, however I appreciate that's just my experience. But now with coronavirus we've decided to delay for now.

To be fair to my sister she has been great, although she lives some distance away. The move near me wasn't anything to do with my siblings, my mum and dad announced they were moving one day and they had chosen where we live!

My main concern at the moment is something happening to my dad and me being called into the breech in the meantime. I'm practicing saying no.

And for those going through this.

My mom had my nan live with her for 8 years. She was diagnosed with dementia at the beginning of this year after becoming ill last October.
About 5 weeks ago my nans health declined and she was up all night, had numerous falls during the night and many other issues.
My mom couldn't manage, her and my dad were unable to sleep and they were exhausted. I could also see that mom mom and nans relationship was suffering because of pent up irritation on both sides. The social worker ruled that it was unsafe for my nan not to have 24 hour professional care and she is now in a residential home (moving her there during lockdown was horrendous but that's another thread). My mom felt incredibly guilty because she was relieved. She's really struggled with the guilt until we found we were able to visit nan at the home, the lovely carers bring her to the door for us, and mom and nan can have a 'chat' and be a normal mother and daughter for a while. I think their relationship will benefit from this, once the lockdown is eased and we can visit properly and take her out for a couple of hours.
I understand how you're feeling, the guilt can be overwhelming at times.

Gondrinkin,
I understand how you feel. I have seen parents and or siblings or both expecting that X will be available to mind elderly parents.
I would be making plans that will keep you as busy as possible so not to available at a moment's notice or be in a position to take on full time care.
I have a friend at the moment in her late 40s. Like yourself she has realised that in time she could be expected to be their to mind her mother. Her mother is in her late 70s with a few minor health issues. This lady has treated my friend poorly compared to her siblings.
My friend is making plans that will ensure she won't be available as expected for care of her mother. She said to me let the siblings my mother favoued look after her.
My friend has seen 2 friends dealing with elderly parents with health issues and she said I am not doing this. Also with modern medicine people can be kept alive but end up with a poor quality of life and needing a serious amount of care.
She said I am not been selfish but I have to consider my own life and long term future.

Katyy, I'm so sorry that you've had so many years of 'servitude' when you should have been free & doing your own thing💐
I hope you can be free again soon🎈

B1 Thanks for your recognition of my life so far . Feels good to talk 😜

@gondrinkin
There is a toilet support seat an OT could assess for to prevent the falls from the toilet.
Do they have telecare? In my area she could have a pendant alarm and be responded to by a team who will support her up from a fall.
But it sounds like you are right to be looking at care homes. You can contact Social work services in your area for a needs assessment. Does anyone have power of attorney? Time to do ASAP if not and your mum still has capacity.

My dad took early retirement to care for my mother. I know I'm not doing as much for him as he did for her, but I really think there is a difference between caring for a partner and caring for a parent. I imagine I could tolerate more neediness from DH than I can from my father.

gonedrinkin. So sorry you’ve been the chosen one, it does sound a bit strange, at least you have siblings , I’m on my own . I would keep looking for a home your poor mum doesn’t sound safe now, it’s a very difficult thing to do, I once had to find respite care for my dad when mum was ill it was one of the hardest things I ever did as he was non verbal but understood everything, if looks could kill I’d have been dead soo upsetting ! I wish you all the luck in the world

My mum died almost 7 years ago. She had pancreatic cancer and could not eat without vommiting. Her weight went down to 5 stone 6 at the end. My sister's and I all moved back home to look after her. We were told she had 3-6 months left. Watching her pain and deteriorao every day was torture. In the end she died after 6 weeks and I felt so guilty because I felt relief and could go home to DH and older children. People kept telling me how sorry they were but I was glad she finally had no more pain and vommiting.

Op what you feel is normal. Don't feel guilty. You just have to try to be patient with her. After she passes after the first few months you will somehow forget the end and remember happier times. It is very tough at the time though. Accept any help you are offered. We did not let others help and regretted it.

My Dad died of a massive heart attack and it was quick. I had so wanted something similar for mum instead of the drawn out painful death she got.

Carincarer so sorry you had to go through this with your mum it must have been heartbreaking, at least you were all there that must be some comfort.
We all feel guilty one way or another. I’m feeling terrible at the moment because I can’t be the daughter my mum wants me to be we’re both very different personality’s .
It’s just the way it is and it’s part of the grieving process too.