PSP Association

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Anxiety about advanced disease

For those of you who have lost your person with PSP, when you saw that things were heading towards advanced or end stage disease, did you get anxious about how things would go towards the end? (I am.) Did your loved one get anxious?

On one hand we know what will happen and it’s been a slow process of losses for some time. On the other hand things can change very quickly, and I am wondering how you and your loved one managed that transition / adjustment (emotionally) when you knew that the end was fairly close or imminent. I’m not sure what I am worrying about— I think I am anxious about how much more my mother will have to endure.

13 Replies

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Dad is still here after 5 years of suffering. He doesn't change for days then bang, lots of little downward changes. How do I handle it? With deep breaths and for me being there to support my mum as she is dad's main carer. My husband is then there for me. My mum will probably read this so hi mum (Brenda),

I try not to think too far ahead.

We know what the end will be and that it can not be stopped. I see my dad every day, just to check in, say hi, to feed him if he is eating, to try to get some drink into him, to give him a massage or just to sit and hold his hand. It is today, the hear and now for me which is important as it is this memory which I will hold dear for the rest of my life. I just let the future come and take care of itself.

Dad can not talk or express what he wants in anyway so we are unsure what he feels but I like to think that having mum and I around talking care of him, gives him the reassurance to know that he is wanted and loved.

PSP has to be in my opinion the worst disease that someone can develop. They can suffer for years with no treatment and there is still very little understood about it. It is awful for the sufferer but it strips the family too. We just have to stand together and ride this roller coaster as it does give us many ups and indeed many downs.

Sorry, I might not have answered your message as you needed it to be answered but I want you to know that unfortunately there are many of us in a similar position to you.

Your anxiety is perfectly normal, I was very anxious in the beginning until I decided to stop looking too far ahead been as I had no control over it and as a control freak it was hard for me to let go but it was the only way for me to not go crazy. Everyone's psp ride is different and we all approach it differently.

Take care

Pj xx

You are right, I need to stay in the moment and not look forward too much. We do keep things cheery and focus on quality of life which is still decent, but now and then I realize how tenuous a situation she is in. A roller coaster is a good description. Thank you.

Dear Martina, I am so sorry to hear how you are feeling. I don't think anyone can really prepare for imminent loss of a loved one and I believe that everyone handles it is a different way.

All I can say is that I knew that it was coming to an end when my husband stopped eating and drinking as I think he found both such an effort. I don't think he was anxious as I just felt he had given up as life was too much of a struggle, but he was anxious if I was not around so I had to ensure that our grandaughter, or my youngest daughter, were around when I was not as they could both cope with the way he was. Not all the family could and I had to respect that. Having people around who were very emotionally upset could have upset him if he was aware of what was going on around him. I don't know if he was but he could somtimes grin if a funny thing was said, so I guess he was aware.

I felt very sad for myself but I was also glad that he would not have to suffer anymore. I do believe that there is something better after death and I guess that helped as I just felt that he would be free of the disease and be able to be himself again and that gave me comfort.

I hope this helps a liitle. Thinking of you. Big hug. AliBee x

Thank you, I appreciate hearing your story. Yes it does help.

Yes after experiencing a few near death experiences the not knowing how it will end did make me anxious and had me worried about just how bad it’ll be. However the end was no different from those previous times, it seemed like they had just had enough and had decided to stop fighting.

Dear MartinaIt really just a case of taking it day by day, hour by hour and being there for our loved ones.

My husband was a bit like AliBee's, it all became too much trying to eat and drink and he gave up. He did have one anxious period but that was because he had been put on hìs left side and was uncomfortable but the District nurses came in as soon as they were called and made him comfortable.

Otherwise he was very calm and peaceful. We always knew that he would die because of PSP and he accepted that calmly and he slipped away the day after Christmas 2019.

Please be kind to yourself and try to have extra support if you can.

Sending hugs

Anne x

Hi Martina_MP!!In our case we had an approximate evolution of symptoms (in each patient they may be different and in a different order of appearance) and we had an idea of what was happening. The truth is that when you reach the final stages, you cannot quite believe that you are near the end and, despite all the information, the end surprises you.

By internal chat I send you a personal and updated version of the phases of the PSP disease including the final stage.

Hug, luck and courage.

Luis

Would u mind sending that same info about end stages to me? i thank u so much!

Hi MartinaMy mum battled for several years with PSP. We just learned to live with her failing health.

I went on holiday in 2019 and she died in her sleep very peacefully. Very shocking for me as I had no inclination that her time was near, she had endured so much (falls, fractures, infections).

Selfishly I wanted her to live but she got her peace.

Take care and just keep going x

I can so relate to how you feel. It was so hard to see Mum reduced to just sitting in a chair and relying on other people for everything when she had always been so independent and looking out for others. I think the last few weeks, she got comfort and accepted the inevitable because she knew I was going to be alright. One of the last things she asked me a few weeks before she went was did I spend so much time with her because I didn't like being with my husband. I don't think she seriously thought that but she just needed reassurance that I was going to be OK, so my husband & I made a point of spending time with her together and chatting & laughing away, so she knew I was happy with my lot. I was very concerned about how things would happen but had a wonderful Community Matron who guided me through the whole process and got things in place before they were needed. So end of life drugs were got, so it wasn't a panic when they were needed. The doctor came in the last couple of days, so a district nurse could certify the death without having to wait for a doctor. She even got me to talk to the undertaker so that when the time came to call them it was just a quick call, as all the details had already been taken. I also had fantastic carers who were so good to Mum & me. Mum was treated with such respect and care, she was able to maintain her diginity throughout. The last couple of days were actually a very special time and a time I cherish. After all the traumas of PSP, the end was quiet & peaceful, at home with the people she loved best.

For now try not to worry too much but enjoy what the two of you have left. I hope you are able to hug each other with the current situation. xxx

Thank you, really good point about her needing reassurance that you would be all right.

Thank you all for sharing your experiences, now and previously, as I have looked back and read a lot of older posts about the final stage—your accounts have been so valuable. We are hovering somewhere before that. One day at a time; I will arrange the support we need; love will get us through.

Can completely relate. The unpredictability is as excruciating as knowing that this is going to end. Always wondering, is this it? And knowing all the while that it can get worse is anxiety producing. And, of course, there’s no one who can really tell us either. It’s so individual.