It is a very long time since I have had the energy to talk with you all. I feel I must do so before Ch passes from this life. It is hard to find the words. I was tired and dejected with myself as carer, nurse, wife etc and was thinking of phoning the Social Worker with the Palliative care team when she phoned me. It was early in the new year. She called in and brought some brochures (you know how they do). I read one which said " how caring for a dying person is a privilege". This statement turned me around and although it was still tiring and difficult I found I could rejoice in our time together. Dont get me wrong I still got irritated at times but I stopped trying to get him to do things which I thought would fight the inevitable. I went with the flow more. He didnt want to do puzzles , watch TV or listen to Audio books. I think I thought that if he would do some of those things I could get on with chores. But he did want me to be with him chatting, reading which I then did and still do.
However that time went quickly. We began to require a hoist and in so doing we were provided with a weekend palliative care shower team to add to our (during the week) level 3 package care team (which gives us 10 hours/wk). And now suddenly the Pall care shower team comes daily and the others come each afternoon to give me some time to do chores, garden, cook or shop. Ch now needs someone with him all of his waking hours or he gets agitated calling me over and over. (I was busy but as it is lock-down I can not go to my couple of groups anyway.)In the evenings he calls even when I am there so we manage this with medications which help him to rest a little. Usually by 11pm he has settled and mostly sleeps the whole night now.
Coughing and choking began about a week or so ago so i began the pureeing of his food (instead of just cutting it up small). It seemed to happen so quickly and a couple of days ago the coughing and choking turned into a frighting inability to breathe properly so I called the Registered Nurse (Pall care had sent one weekly for about 3 weeks), I gave him a little of the morphine (provided for pain not yet experienced) and his calming medications, sat with him until it eased off and he slept. Next morning the RN called early and by the afternoon the Pall care doctor came and we realised that these are the final days. We dont know how many days but each one is another adventure.
Thanks for listening ... val
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I had similar experiences. I kept insisting hubby did something to help around the house - 'use it or lose it' attitude, and I was grumpy with it!
Our last Xmas together was peaceful because we called a truce and just enjoyed each others company with no pressure.
We had 6 months like this before life became chaotic - like yours seems to be at the moment - and then quality of life suddenly went topsy-turvy and he ended up in hospital with a total collapse.
I am pleased you have been able to get help and support in the home and that palliative nurses are available to you.
Be yourself with him, make laughter and enjoyment and hold hands while you can together. It may not be long.
I totally agree, being a wife gets forgotten about under the avalanche of caring. The most important thing for you to do now, is hold your husband, tell him you love him and its alright to let go. I did manage this in Steve's final days and yes, your brochure was right, it was a real privilege to help him through those precious hours we had left together. I can still feel the warmth and love today, three and a half years later.
Sending big hug, much love and all the strength I can across the ether.
Jeff is so right, Val, it is such a hard and lonely thing to go through.
Your story will resonate with many on here, especially around trying to keep our loved ones engaged and motivated. For me I thought that by trying to encourage Rod to keep trying to do things it would give him some normality and maybe, just maybe slow down the progress of the disease. Looking back I think it was wishful thinking on my part, where perhaps I was hoping to see a little sign that things weren’t as bad as I thought. Well, PSP had other ideas and I did realise when it was time to accept his limitations and allow him some peace.
We all question what we did and didn’t do, but what I know for sure is that our loved ones are very aware that we’ve been there for them throughout. The time that you have with your husband now, chatting to him about anything and everything, holding his hand, just making him feel very loved, will be of great comfort to him and to you. When the time comes to let him go, remember that you could have done no more and on tough days, and there will be some, there’s always someone here to listen, who really does understand.
Hils
xx
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It is amazing how a few words can lift us up at just the right time. My heart is with you & hubby. Sending you both gentle hugs... Granni B
It is so tough being a carer for a loved one with such a profound disease but the brochures were right in saying it is a privilege to care for your partner but isn’t always possible for everyone I lost my husband two years ago and I feel proud and honoured to have nursed him in his time of need. It is a relief to come to the conclusion that it isn’t in his best interest to try to make him do things he really doesn’t want to do or is way beyond his physical and energy levels. Take pleasure in helping him in his last days despite the physical grind, he will feel the love.
Posts that talk about how Covid has brought extra heartbreak into people’s lives due to restrictions of being allowed to see them is just so, so sad, and finding words of comfort for anybody it this situation is just impossible.
I hope that as time goes on you will find some peace in knowing that the care you gave him during that 6 years, a long and very difficult journey, was a great gift of love to David, even though you could not be together as you would have wished during those last weeks.
My heart goes out to you in these difficult days. I think you are quite right to just go with the flow and make use of all the support you can get and remember that we are all here for you. Sending you lots of love
We haven't reached this stage yet, but it is so helpful to hear about the progression of Ch's problems...and yours. Thank you for being so open to share.
I'm glad you have supportive folk around you...not easy at this time. May you know a strength and peace beyond your understanding during these coming days and weeks.
So very sorry, it's just one day at a time, it's very emotional, hard work, time seems to last forever, it's a road you have to take with your husband to the very end, sending strength and love to all at this very sad time xx Julie
Hi Val, it is a hard, long and lonely journey. Now let the carers do their job and attend to your husbands physical needs and you can go back to being the most loving wife you were before PSP rob you of some of that.
Sit and hold his hand, talk about all the happy memories you shared together, the laughs you shared, tell him how special he is and how special he made you feel, even have his favourite music playing softly in the background. I did this with W in his last weeks and believe me it gives me some comfort that we had that very special time together. He left this world knowing that he was very much loved.
My heart goes out to you, take care and lots of love,
Thanks for sharing. Life is short but the disease can seem like it goes on and on. Taught me how to live in the moment or I would not survive. Blessings be yours!
Val, Thank you so much for sharing your experiences at this very difficult and sad time. It is so very helpful to have an insight into how things can go as we all plough through PSP together as carers or cared for. Thinking of you as you face this hard (privileged) time and hoping you make the best of each day’s adventure that lies ahead.
Im sorry for what your about to go through i hope some peace can find you just knowing that he no longer has to live the life of PSP. As much as i try to think of mom in a better place Im still missing her so much. I think thats why im still having such a hard time with all this. Hugs and prayers for you and Ch. I really do hope peace can come to you both.
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Dad's final good deed
