Hi everyone! I’m new to this group and would like to thank everyone for sharing their stories. I have read quite a few so far and feel grateful for having stumbled across this community.
I am a mum of 2 young kids (1 and 3 year old), my dad (74) is the main carer of my mum (75). My mum had a bad fall just before Covid (Oct 2019), broke all her ribs in her back and sustained a head injury. Unfortunately even after doing a CT at the time, the doctors didn’t say she had a head injury or bleeding. They were concerned about her broken ribs but sent her home after a few weeks with lots of meds and physio. It took my mum quite a while to recover and repair her ribs. It was after this fall that we started noticing that she would fall a lot more / lose her balance. We put it down to her becoming older and clumsy. After my pushing they got another CT done early 2021 when they found some residual old blood in her brain. As I was expecting my first child in Oct 2021 and my mum wanted to travel to be there for me when the baby arrived ( I should have said earlier I live in London but my parents live in Europe), she decided to have an operation to remove the residual blood clot. As they say, the rest is history. I wouldn’t say that operation triggered everything but it certainly didn’t make matters any better. She continued to fall - fast forward 3 years, she’s now completely immobile, her legs and arms are totally stiff, she has onset dementia along with her Parkinson, she’s severely incontinent, she can’t close her mouth, she can barely speak a sentence, she can’t feed, dress, wash herself and needs assistance for everything. She’s now also struggling to swallow and has a swallowing problem as her vein that supplies oxygen to the brain and helps swallow (not sure what’s it’s called) only has a 30% functionality. As I mentioned, my parents live in Europe, I can’t uproot my life and move with my two little kids, I don’t have any siblings, so my dad has become my mums main caregiver. He, however, is at the end of his tether and cannot cope anymore. Like many others, I can’t blame him really as he’s doing really all he can for her but his frustrations are growing rapidly and he’s losing his temper with her more and more and when he speaks with her, his tone is so disrespectful and full of resentment. I know he’s doing a great job, I am not sure I could cope for as long as he has but what I am really struggling with is his ‘victim’ mentality ie this is all ready hard on me etc but I will not accept any help etc. my mum doesn’t want to go into a care home but I think that would be the best for her at least they would treat her with the respect she deserves which my dad cannot afford her anymore as he is just so absolutely frustrated with her. I have tried to come back and see them with the grand kids a few times this year but must admit it has been hard. I’ve travelled alone as my husband has had to work so instead of being able to spend some time with my mum I have had to attend to my little kids and hearing my dad losing his temper with my mum really upset me. My dad as much as I love him is a complex character and has always been. He will feel sorry for himself for being in this situation but he won’t accept any help from me, other family members, other carers etc but he will complain about it. Maybe it’s the martyr complex?! I don’t know. All I know it’s hard for me to witness and when I have left to go back home I hate to say it but I have felt relief to be able to escape the sad reality of this and go back to my family and home life. I am hoping to bring my mum over to London for a few weeks with my dad, organise an air bnb for them close by and organise a nurse for them which will hopefully both give them a bit of a break. My husband and I have travelled with the kids to see my parents but the last few days have been taxing and now my 3 year old will ask why is granny crying or why is grandad shouting at granny which breaks my heart. My son is very sensitive and will pick up on this and it has upset him. I feel such a dilemma: on the one hand I want to visit my parents more often and bring the kids round as it gives my mum joy just to see and hear the kids. On the other hand, I don’t want to scare my kids and I don’t want to end up resenting my dad which I do when I see how he treats my mum. Sadly, I can’t speak to my husband about it either. We don’t communicate very well and have some issues of our own, so I feel very alone in this situation often not knowing who to turn to. Apologies for this really long post and I apologise for not making much sense or having no point to this post but thanks for reading if you’ve spent your valuable time reading my post!
Hello JK16,
We’re so sorry to hear of the situation you all are struggling through. Parkinson’s can be especially cruel in the later stages, and affects whole families. This is why we are tirelessly devoted to the search for a cure.
One thing you can do is contact our helpline on 0808 800 0303. They have a raft of services they can offer, and can put you in touch with European support for your parents. They also offer services for carers, even if it is just an ear you need.
Please accept our warmest welcome,
Jason
Forum Moderator
Hi Jk16,
You’re stuggling through awful times at the moment. It doesn’t sound like there is a good solution that’s going to leave everyone satisfied. If your father can’t look after your mother anymore then either carers or a care home would be the answer but you’d have to pursuade him. I’m assuming your mother wouldn’t be able to decide for herself at this point. Perhaps if he gets a break he will realise how much it is taking out of him. There is respite care in the UK (which they are probably not eligible for) but I would imagine there are similar things in Europe. The helpline Jason mentioned maybe able to tell you/give you contacts.
I don’t know your Dad or what you’ve said to him previously but maybe you need to sit down and talk it all through with him.
My only other advice is to try not to feel guilty, you can’t be everywhere and you can’t fix everything. It sounds like you are trying hard. Be kind to your self.
all the best,
Podd
Hello JK16
So sorry to hear your whole family is being impacted by your Mother’s decline. Your stress and sadness is tangible in your post.
Friends of friends who live/d in France were involved in a bad car accident where both husband and wife experienced head injury. The wife was subsequently diagnosed with Parkinsons.
You haven’t said whereabouts your parents live and/or if they are nationals of the country they live in.
If they were living here my thoughts would be to contact Social Services for assessment and help because it sounds like both your parents need help. Obviously you’ll need to know/understand the health care system where they live to seek help. The Parkinsons UK helpline is a font of knowledge please give them a call they are likely to be able to offer you more specific information. Best Wishes Jane (Plus1)
Best Wishes
Hi JK,
Oh you do have a lot on your plate! And bearing it all alone must be so hard. Your brain is buzzing because you care so much as well as having your own life and needs. Sending love.
Your Dad sounds as if he is really at the end of himself yet I wonder if that commitment to keep caring for her without help is a measure of his love and commitment to her despite his loss of patience through sheer exhaustion. Its a complex one. What you see and hear might not be the whole story. I am carer for my hubby and I am at the end of myself at the moment. Doing Christmas has been hard. I love my hubby to bits but can also identify with how you describe your Dad. What stops me being beastly due to exhaustion is taking breaks. A weekly morning at a cafe, just on my own, time alone when someone else takes him out for some event for example.
If your Dad won’t accept statutory help, do they have a social circle that includes friends who might sit with her? Take her out? Would he accept that sort of opportunity for a break? He needs care so he can step back, regroup and keep on caring for her.
If it has become as bad as you think it might be, and you have actual evidence of lack of care, cruelty or whatever, then for her wellbeing it may have to be taken out of his hands and an outside agency assess and sort out care help or residential care for her. That would be a very sad and very serious step to take though. I hope it isn’t that bad.