Late stage Parkinsons- where to turn?

My mum has late stage Parkinsons. She will be 80 this year in July. She was diagnosed in 2003 at age 62.

She is in a bad way. Sleeping a lot more recently- she is very fragile. Used to be able to go for a daily walk with my dad but unable to make many steps at the moment.

She has frequent postural drops which are frightening. I am currently spending the weekend with my parents and young children so I am experiencing those first hand.

I had to lower my mum to the floor when this happened in the toilet today. She is saying that she is freezing cold and wants to wear lots of layers.

She is slow in her thinking and words don’t come easily but she is still ‘herself’ if that makes sense- other than getting confused sometimes.

My dad is the main carer and age 82. I don’t think he can take this stress much longer and it can’t all be on the weight of his shoulders (literally) so I know I need to chat to my brother about what we can even do.

Can anyone who has lived through this situation give any words of wisdom? Clearly as a starting point, my dad needs support and a care package put in place. I guess I should try and talk to my mum’s doctor and try to assess exactly where she is in late stage Parkinsons.

It’s very sad when mentally she is not so bad and physically she has to deal with so much. It’s very hard to watch and stressful not knowing how to navigate for the best outcome for everyone. My children are very young- age 4 and 5. Any wisdom is much appreciated. Thank you

Hi HavanaS,
We’re sorry to hear things have been difficult of late with your mum. Before our lovely community shares their experiences and advice, we wanted to again offer our free and confidential helpline, at 0808 800 0303. You don’t need to be a person with Parkinson’s, and they are able to offer local resources and various kinds of assistance that are beyond the forum community. In addition to discussing any changes with your GP and Parkinson’s Nurses, we would urge you to consider giving us a call.
Best wishes to you and your family,
Moderation Team

Hello, I’m sorry for your situation. If I were you I would try and make contact with your mother’s Parkinson’s nurse to get advice about dealing with the symptoms such as coldness.

Also contact social services for an assessment. They will be able to set up a support package for your parents. I’m afraid I can’t remember the precise name of the system. If you have an Age UK office in the location they will be able to help you, and also supply other information, such as day centres and other support.

I’m afraid I don’t have any direct experience I can help you with, but I’m sure others on here can. Hopefully you will have a short period of dealing with officialdom followed by reassurance of help with your mother and relief for your father.

Good luck, and try to look after yourself as well as parents and children. :heart:

It is a really hard place to be, trying to be Mum to your children. Support your Dad and your mum and juggle everything else.

Your dad clearly needs support now in caring for what is now for your mum a very complicated stage in the disease. I would agree with you, it is time speak to your mums GP. The GP should be able to refer you to the local elderly care team, who can assess your mums needs in consultation with your Dad, your mum and you. Then involve with social service support draw up a care package that best. Suits her needs.
It is possible that her condition would improve with some tweaks here and there with her medication.
The government produced a paper that outlined the need for multi discipline care teams around the patient, in the community setting but I suppose it’s not happened due to funding or the lack of it.
How many families are finding it exhausting trying to care for their relative and navigate the healthcare system for support.
Reach out for help, I hope it’s out there for you.
Good Luck

Just jumbled thoughts which come to mind:=

  1. Is there a local Par
    rkinson’s group? If so, contact them to get advice and find out if they have any volunteers who can visit and either help with care or just be there to chat to.

  2. Is your mother on any medication? There are side effects but the sooner she goes on Levadopa the better in my opinion.

  3. Sort out a care rota with your brother.

  4. Are there any other relatives or friends who could visit?

  5. The local authority might be able to help with putting in rails for her to hold onto as she goes around the house.

  6. Physiotherpy through the GP

  7. Has your dad applied for Carer’s allowance?

  8. If your mother’s mental health has been affected you night get a Council Tax discount

  9. Have you applied for Attendance Allowance or any other benefits?

  10. ls your mum entitled to a car on the Motabilty Scheme?

Thank you. I appreciate you taking the time to respond. I will have a read through and a think about the suggestions: )

Thank you so much. Yes- I think they are trying some tweaks to medication. I really appreciate you taking the time to respond

Hello there

My husband has advanced Parkinsons and is cared for at home 24/7 with CHC funding. We have really been through the mill with regards to his care and have had to fight to get the right care in place. My thoughts on your situation are

1 Talk to your mothers GP and/ or specialist nurse to identify the care needs.
2 Discuss medication and situation with her neurologist if necessary using specialist nurse
3 Ask for carers assessment for your father

When considering a care package, would visits during the day help or given the unpredictatability
of her “postural drops” and the fact you feel the need to be there at the weekends mean they need
a carer with them for much longer periods.

If you think your mother is entitled to CHC funding there is plenty on this site to help you through Beacon, an organisation specificallly set up to provide advocacy for you. Alternatively there is another website called “Care to be different” which may help.

I send you and your family my very best wishes. Just remember you need all the support you can get and it is out there : it’s just accessing it and acquiring the knowledge to do so.

Well done you

That is amazing advice. Thank you so much for everything. You have given me some things to look into. Huge thanks. Hope you are doing ok with your husband- it is such a challenging situation

When patients reach stage five – the final stage of Parkinson’s disease they will have severe posture issues in their back, neck, and hips. They will require a wheelchair and may be bedridden. In end-stage of Parkinson’s disease, patients will also often experience non-motor symptoms.