Not sure what to ask

Hello everyone, I am an end-of-life practitioner and as you can imagine this gets very emotionally exhausting after losing so many people. So I have taken on a longer-term patient, he is in his 7th year of PSP and I want to do all I can to make his journey as easy as possible while in my care, I live with him full time, and take care of all his needs, 16hrs per day is usual..... I am basically learning as I go... I have had many Parkinson's patients and MND but this for sure is something else !

I have been with him 4 months now and have a great relationship, I am pushing hard to get him all the services he needs and liaise with physio, SALT, and a Parkinson's nurse, he has not had an appt with a consultant for 18 months but am told there is not much they will say or advise ??

His mobility is now very poor and uses a wheelchair most of the time, he is 6ft 2 and 105 kilos and I am a tiny dot ! but I am promoting as much independence as possible..

He has excessive saliva all the time and is now on thick and easy to aid swallowing his medication.. speech is still audible but getting less, do vocal exercises every day plus sitting & standing exercises... (physio also in bed)

I have modified his diet he is also a type 1 diabetic, has COPD and angina...

He is definitely becoming more withdrawn and apathy is an issue, is this common ?

Depression ?

I am reading as much on here as time allows, I just wanted to see if there is anything else I could/ should be doing...

Thank you for reading

M

[Goodact]

Our parkinsons nurse suggested pineapple and red grape juice to break down saliva?? Not read any supporting material about. I am trialing it. She also recommend sucking on hard lollies as it stimulates the swallowing muscles. And NO dairy.

[Hidden in reply to Goodact]

thank you very much for your reply & information, very helpful.

[OllieFisher1]

1 year after putting my pop in an old folks home.....I have learnt to let go of the issues he is facing and just concentrate on being there during his final journey. I only take action for pain or discomfort. He is often constipated, but I let the staff handle that. Safe, comfortable and pain free is my focus.

[Hidden in reply to OllieFisher1]

I think that is a great thing to do, just spend that time just being. Thoughts with you on this journey _/|\_

[Kelmisty]

Apathy and being withdrawn is normal for this illness, you should read the information on the PSPA website, it’s very good.

[Hidden in reply to Kelmisty]

Thank you , I have just found the information.

[David750]

Hello Hellevoetsliis, I am so sorry to learn of your difficulties, my wife had PSP. In addition to the valuable advice you will recieve here, please contact the PSP Associstion helpline (pspassociation.org uk). They can address your specific concerns. It helps to talk through your concerns with a person knowledgeable in the condition. The Association are endeavouring to place Link Volunteers (who have personally looked after PSP or CBD) around the UK. These give 1:1 support in the home where geographically feasible or over the phone. Also there are Zoom groups to join and in some areas group meetings. 🙏

[Hidden in reply to David750]

Thank you so much for your reply and information it is much appreciated, sounds like you had a very tough journey. Thank you for sharing xxx

[AnneandChris]

Hello there

Living with someone who has PSP is not an easy journey for either of you and you know how it is going to end, so thank you for all that you do.

All that you have described is classic. I too had a 6 footer and I'm just over 5ft but we were blessed to have a team of lovely carers, wonderful OT who supplied all that we needed in the way of kit. In particular Sara Steady was invaluable and was used nearly to the end. With their help and a wonderful GP we were able to keep my husband at home (we had previously downsized to a bungalow).

With regard to excess saliver we initially used Atropine eye drops under the tongue, then Solpadeine travel sickness patches. Eventually we needed something stronger and towards the end used Glycopryrrate. My husband only took to his bed a couple of weeks before he died and care was then upped to two carers four times a day.

I do hope this helps. Keep on keeping on.

Anne

[Hidden in reply to AnneandChris]

Thank you very much for your reply and the information it is very much a learning curve at present, but am getting there, you have all been so wonderful and this site is amazing... I am very sorry to learn of your husband an awful journey for you both. Thoughts with you xxx

[NannaB]

A saliva pump was recommended when I was nursing my husband & was very useful. I am also small & he was tall. If you don’t have a hoist yet, try to get one before he needs it as supply issues kept C in bed for several weeks as I couldn’t move him. My husband loved going out so we did several times a week using an electric wheelchair. It cost a fortune but was worth it seeing him enjoying the different sounds, the smell of flowers and sea and feeling breeze against his face. He always put his thumb up when I asked if he was enjoying it. He hated exercise & indicated it hurt so I stopped but gave massages instead. I hope he gets to see other people, family & friends & you get time off but if not there are organisations that provide sitters such as Crossroads giving him someone else to listen to. My husband went to the day centre at the hospice every Friday where they included him in activities. When friends came we included him in conversations even though he couldn’t speak and he’d do a funny humming laugh until days before he died. It sounds as if you are doing a wonderful job looking after your client. Best wishes to you both.

[Hidden in reply to NannaB]

Thank you very much for taking the time to reply, you have had a tough journey.... I have taken to giving him massages and once a month have a professional come in and do a full body one for him. we have a wonderful electric wheel chair which has been great and its keeping me fit jogging to keep up with him LOL... He is not one for socialising as too many people & noise distress him, but one on one he is fine, so am keeping him social... He loves going down to the beach to people watch too... Looking in to hoists & options now, Once again thank you for your message. Thoughts with you xxx

[Dance1955]

hi Hellevoetsluis

I recently lost my husband to this horrible disease for the excessive drooling I can fully recommend atropine drops ( they are really eye drops ) it helps with the coughing too

I was my husband carer for 10 years plus nursing homes just couldn’t care for him properly I tried a few it’s a very hard life for all involved

Take care just come on this site I can recommend you will get help here

All the best

[Hidden in reply to Dance1955]

Thank you very much for your reply, I am so sorry about your very long tough journey, I have just asked his gp for atropine drops, thank you. Thoughts with you xxx

[Dance1955]

good for you just a couple of drops under the tongue at least half hour before meals helps with the swallowing too you may need to increase if things get worse I did my doctor didn’t want to give them to me in the beginning but I insisted and it worked great

Thank you for your kind words it helps and glad to be able to help you too

Xx