Near the end- Stage 5 Parkinsons. Help and advice please

My mum is in a very bad way. I am hoping some of you will be able to help by sharing your experience if you have lived through this with your own family.

Mum has Stage 5 Parkinsons. She has had Parkinsons since 2003. She is 80. A month ago, she was able to go out for dinner with us and sit with her young grandchildren. Things have declined dramatically in the last week or so. She was on antibiotics for a urine infection and is now bed-ridden, hallucinating, cannot feed herself etc.

I contacted mum’s Parkinsons nurse on Thursday who arranged an emergency care team to come x3 times a day. My dad is here as the main carer and has his own health issues to deal with. He is 82.

I have come back home (I live several hours away from my parents). I have two young children aged 4 and 6.

I spent yesterday crying for most of the day, sitting by my mum’s bed, playing her music, trying to give her an ice lolly, and soft food like the yoghurt squeezy that you give to kids. She is alternating between sleeping and hallucinating. I am trying to give her water.

I will be calling mum’s GP and the Parkinsons Nurse on Monday to try to assess where we are as can only assume we are close to the end. Trying to do small things to give comfort. Where do we even go from here? From experience, I don’t think hospital is the place for mum with patients shouting out throughout the night and her medication getting messed up. If these are her last days then I would rather she be at home. We clearly need round the clock 24 hour care.

Any advice on an emotional or practical level if you have lived though the same thing is much appreciated. Thank you

Hello Havana S
My typing is not good this morning so I will need to be quite brief. I just wanted to let you know I have read your post and my heart goes out to you; not only a terribly sad situation but a very difficult one for you and your family. I also wanted to say that I think you are doing your Mum proud. You are doing the best you can and that’s all you can do. I like to think somewhere deep inside your Mum knows that, your Dad will certainly know that. I sincerely hope when you make those calls today you get all the support you need. I wish I had some words to make it alright for you but there are none really, just know you’re not alone, we care and please believe that being there doing the things you are doing is everything you can do for your Mum and your Dad.
Tot

Hi @HavanaS ,
Sorry to read about the difficult situation you are. It is heart melting to read how dearly and proudly you are caring your mum, definitely she is lucky to have you.
As you said hospital is not a good place unless otherwise needed. Hopefully as Tot said after your calls on Monday will be able to sort things out for her. If thinking about keeping her comfortable make sure they are arranging pain management and not stopping parkinsons medications. You 're doing your best and I would say you are lucky to get the chance to take care of your mum. Remember to support dad with emotions as during these stages people have the tendency to hide their emotions.
Thinking of you all. Take care.
Tinku.

Thank you. Your words mean a lot and have made me cry again. It’s hard. I can’t stay indefinitely because my little kids need me too. Huge thank you

Thank you. It’s very hard to see this happening. I really appreciate your kind words

So sorry to read this, my mum died 3 years ago, of cancer, so different but she was at home till the end, and luckily only really needed home care for the last few days. It was hard on my dad, but I am sure would have been harder if he hadn’t been physically in the same location. Hopefully the GP can help arrange some paliative care so she is comfortable.

Remember to look after yourself too.

Thank you. So kind of you to respond. I am still at my parents and the paramedic came last night. She was checked again for infection but there isn’t one. She is sleeping all the time now, but rallied for a little bit last night with my dad, brother and I when the paramedic was here. She even showed a sense of humour when she was awake briefly, which was lovely for us all in that moment.

All of those little moments are something to cherish and remember. A spark of the person you know and love.
I appreciate you are probably torn in two by wanting to stay and wanting to go for your own family. Just keep in mind you can only do your best and you can’t be in two places at once. Children can be remarkably resilient and matter of fact about things so long as you give them simple honest explanations. Be sure it is not your need to see them that is the driver rather than they are concerned about your absence per se. It is an awful position to be in but go with your gut feeling and you’ll not go far wrong. If this is your Mum’s end stage a couple of things that will probably make it harder for you to decide but I have always tried to be honest in my responses and would stress it is only my experience you must take it as you wish. it was my privilege to work for a time in palliative care. It is quite remarkable how long some held on and the end that seemed so close wasn’t. It was also quite common for a person to slip away literally as soon as the relative had gone for a brief bit of air. Point is as I said yesterday, you can only do your best. You can’t be in two places at once and even if you stay you may not be there at the time she passes. Guilt can be a terrible thing but you have no need nor should you feel guilty. your best is all you can do and that will be and is enough.
sending a big virtual hug and lots of love
Tot

Thank you Tot. I will send you a personal message to ask you a few questions if that’s ok, based on what you have kindly shared. I am back in London and it’s all been distressing as you can imagine.

Hi just seen your post, thinking of you and sending hugs x

of course send a personal message. I will keep an eye open for it
Tot

Actually I can’t see how to send you one. It says your profile is hidden?

have sent you a message

Hello HavanaS
It is never easy to lose your mum, from whatever cause. My mum died 5 years ago from cancer which was diagnosed in May and she died in August. I was very lucky to be able to nurse her, with my sister, for this time. We took it in turns, one week on, one week off, and we were with her to the end. The day she died we played music and my father and I danced around her bed which made her smile. She died peacefully at home and I feel honoured to have cared for her in her final weeks. She brought me into this world and I was with her when she left. I kissed her, told her I loved her, and told her she could let go and leave us. She died that night. It will be difficult for you with two young children, but if you do get the opportunity to be with her, then I would take it. Don’t cry and don’t be sad, instead think back on the good times. Talk to her, even if she doesn’t respond, the chances are she can hear you, If you can get the District Nurse to visit, they see a lot of people towards the end of their life and they can often judge when that time is coming - more so than the GP and certainly the Parkinson’s nurse. I wish you joy and happiness in the final days you spend with your mum and I hope you find peace when she leaves you.

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That’s a lovely post Dollýdlollop and wise words I am sure Havana S will appreciate it.

Thank you Tot :heart:

Hi im in the same position as you my husband is in a nursinhg home 24 hr care that is what your mum needs i feel just like you i feel im on my own nd would like to talk to people who are going through the same thing i am sending you a big hug

Thank you. Your post was amazing. I read it at the time and was really touched by it. It helped so much. I thought I had responded. I am so sorry that it appears I didn’t.

Your kindness at such a difficult time was wonderful. Things have improved a little. Will write an update at the end of this post. Huge thank you

Hi Cheryl
Please feel free to get in touch with me direct. I understand what you are going through.

Hello everyone
Thank you for all your lovely responses. I am going to let you know what happened in case it prepares anyone else in the future, who happens to be going through the same thing.

My mum was very, very poorly for 2-3 weeks. It was a very distressing time and we felt she was very close to the end. It turns out you can be this poorly and then still come out the other side.

The learnings from this are that ICT emergency teams can be put in place. They come for a couple of weeks at very challenging times. Following this, at some point, you can potentially be eligible for a care package at home. I spent 18 years with my mum having Parkinson’s, not knowing that care packages would kick in and not knowing what was available.

We have had help from Hospice at Home and through various charity care agencies. I think it’s important that people know what is out there.

My mum is slightly improved. She is still bedridden, but she is no longer hallucinating. The kind neurology doctor said she is doing ok for an 80 year old with Parkinsons. I understand it’s a case of ‘use it’ or ‘lose it’ so they were going to try to arrange some physiotherapy. I think what helped my mum was when I stopped playing the sad songs and started to play Florence and The Machine ‘Dog Days are over’ and ‘Shake it out’ ; )). Also little steps like moving the bed into the living room so that she had more to be engaged with. I took some colouring books and brought her grandchildren to see her, which was undoubtedly uplifting. She also had plenty of ice lollies and yoghurt when that was the only food we could get down.

I had wonderful help from some of you on here through this extremely difficult time. I am eternally grateful that you held my hand through all of this.

Just sharing an update in case it helps anyone else.

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