Rapid Decline

[Loveispatient23]

Sadly my father-in-law's heath has rapidly declined in the last 3-4 weeks. His speech is mostly non-coherant (its a guessing game to try and understand him with the little voice he has left). He sleeps virtually all day apart from trying to get him to eat some food, of which he has been managing a few mouthfuls. He cannot do anything for himself and cannot support himself to stand without a lot of help. He is still (just about) being transferred from bed to a MoLift then to a recliner chair so not bedridden as yet. He has lost interest with everything, he could watch all the quiz shows on repeat four times over and still be interested. He was diagnosed with PSP last October but we think this has been going on for the last 4-5 years. Lately he won't wear his glasses as he says they are no good, also his false teeth are bothering him a lot. The sad thing is his memory is very sharp, he knows exactly what is happening.

He is under Palliative care and has been visited every 2-3 weeks by the local hospice nurse and the district nurse. After their last visit on Thursday things have moved at an increased rate. We have been referred to the NHS who will be taking over his care as they are classing it as End of Life. My in-laws were having to pay privately x 2 visits morning and night, ideally they should have had more visits but refused as they felt they were already paying enough. Now it will be upped to four times a day. Unfortunately we can't continue with the carers we have used all year as their quote for the contract was just too much for the NHS to pay. My mother-in-law, who at 86 is the main carer, is utterly exhausted but she insists that she wants to keep her husband at home as much as she is able. We know she won't like the change in carers or people coming in all hours of the day but we have told her that this is what needs to happen to keep him at home. We were even offered a Marie Curie nurse to stay all night, which took us all surprise as we didn't think the end would be this near but my mother-in-law didn't want this. Thankfully my husband is always around to support his parents, its taken such a toll on him too, so much so he has taken a break from work to care for them both. PSP doesn't just impact on the individual, it impacts on all the family.

We don't know how long this will last before the envitable will happen. It's so very sad and so cruel. My older children know what is going on but our little 8 year old doesn't, she knows Grandad is very ill, she will be devastated, we believe she has kept him alive all this time with her lively spirit and sense of fun. She tells him every night that she loves him and he responds " I love you too my little cherub". It always brings a tear to our eyes.

For all of you that are treading this path, my heart goes out to you all. We have our faith which is keeping us going and I hope the end is a peaceful one.

Thank you for listening.

[DaffodilPrimerose]

I am so sorry to hear of your story. PSP is a cruel, very cruel disease and the toll is awful.

Have you sought any social worker help to talk to 86 year old carer mum? While a younger generation will want to be respectful of course and not to remove any of independence, residential care may be so very desperately needed for comfort, safety and family health and an 86 year old may not be the appropriate decision maker. It is so hard to say that and to write it without seeming disrespectful but based on my own experience looking back, it is the only advice I can offer.

[Loveispatient23 in reply to DaffodilPrimerose]

Thanks for your reply DaffodilPrimerose. I understand completely where you are coming from. We have exhausted all avenues on this. We shall see how the new carers perform and take it from there. It's so hard when my mother-in-law and father-in-law have been inseperable for the last 65 years .

[AnneandChris]

Hello there

I'm so sorry you all find yourselves having to deal with this situation.

I was in a similar position five years ago. with needing additional support to help care for my husband in his final days. He deteriorated rapidly and was fortunate to have support from a wonderful GP, amazing district nurses and a team of lovely carers. However, when it came to having overnight support for the last few night Christmas week, it was impossible to get any, local hospice at hlme, Marie Curie etc. etc. were all unavailable. Fortunately the district nurse who was with me that week knew of a private agency and within half an hour overnight nursing was arranged. She arrived at the appointed time and took over. I was able to become a loving wife and have a much needed night's sleep,

My point is, please persuade your M-i-L to accept all the help she is offered, especially if it is funded. Otherwise, she faces burn out when she will be of no use to anyone.

End of Life is an emotional roller coaster at the best of times and she needs as much care as her husband.

After my husband died, the day after Boxing Day, I was physically and emotionally drained. I thought I was coping well but it had taken a much heavier toll on me than I had realised.

I hope this helps

Sending hugs

Anne

[Loveispatient23 in reply to AnneandChris]

Thanks AnneandChris for your lovely reply. I am so sorry about your husband and I thank you for all of your honest advice as you have lived through this awful PSP journey. We will definitely keep on with the persuasion. I really admire my mother-in-law as she feels she is doing nothing less than what she has always done but we do worry about how she is going to cope emotionally and physically, especially when the time comes.

[Leosta]

You're right that PSP impacts everyone close to the patient. Reading your first paragraph was so sad as your father-in-law's decline was so like my husband's.

I kept him at home. It was his wish. The toll on me was enormous so I feel for your mother-in-law. The closeness of family and the joy of visits from his grandchildren are very important now to your father-in-law.

I pray for you all and that you will be guided to make the right decisions for him.

Talk to your mother-in-law about reconsidering the Marie Curie nurse.

🙏 xx

[Loveispatient23 in reply to Leosta]

Hi Leosta, I have been reading your posts throughout your PSP journey too and I'm so sorry about your husband. It is my father-in-law's wish to be kept at home, it is where he feels safest. All of his grandchildren are special to him, thankfully he was able to go to his granddaughters wedding in August which was a huge operation to arrange but it was a very precious moment. All we can do is trust in God, as we know he will guide us to make the right decisions for him. We will definitely have anotehr talk about the Marie Curie nurse, I just think my mother-in-law finds it hard to handover responsibility as she feels that only she can provide the right kind of care.

[Leosta in reply to Loveispatient23]

Dear Loveispatient23, thank you for taking the time to reply. I know how your mother-in-law feels. I've always been a 'if you want a job doing well do it yourself ' person and I had problems coming to terms with the carers and their manner of doing things, but I realised that I needed some help. One person can't do everything, especially when they are getting on in years.

Even Jesus had a team of disciples to help him with his mission. 😊

[Sun-flowerwearer]

I reread your post a couple of times… my thoughts are that it does sound like your dad is advancing and although the palliative team are indicating he may be getting closer to end of life be prepared for this stage to last a year or more. My husband died at home in August and he was at the stage you describe above for 18 months! He had end of life medicines at home just in case…. For 18 months. It got worse as time went on even though it’s impossible to comprehend how it can get worse. My husband lost his ability to open his jaw , could only take in liquids fir the last 5 months and stopped having bowel movements for up to 20 days at a time … I had Marie Curie nurses sleeping over about once a week for nearly a year .. in my husbands final week they came 7 nights in a row. I am 63 years old and found having someone else watching over my husband while I was able to sleep in a separate room invaluable and in that final week they were so supportive and kind to me. Literally angels. Please encourage your mum to say yes please to their offer of help. It does not mean the end .. they are there for your mum to try and find time to sleep as much as for your dad and are free of charge as they are a charity.

I’d be asking for an Urgent CHC funding review now too via your GP and Palliative care team. Our local Hospice Nurse remained with us right to the end too .always on the end of the phone if I needed advice, visited fortnightly and took over advising the District nurses in the last week. I’m confused about why they stepped away if they felt things were advancing

Ask the Hospice Nurse why they are stepping back… seems the wrong direction if they are concerned it is end of life.

I know how hard it is for your mum … irrespective of care help coming in for probably less than an hour a day … she has the worry and stress and fear for the other 23 hours every day without even beginning to understand the physical toll.

Very hard x

[Loveispatient23 in reply to Sun-flowerwearer]

Hello Sun-flowerwearer, I recognise your name from previous posts and know you lost your husband a few months ago, of which I am truly sorry. I know everyone's PSP journey is different and just hope that the last days will be peaceful. We still have the hospice nurse visiting along with the district nurse. I will keep working on my mother-in-law to accept all the help that they are entitled to.