I have finally come to the end of my journey being a carer for my mother who passed away whilst I was holding her hand on Tuesday early morning.
I would love to say that it was a beautiful end etc. but it wasn't. My mother lost her swallowing reflex completely 10 days prior and so over her last days she slowly dehydrated until by the end she was a dry husk of her former self and was barely recognisable. I am so angry that such a kind and generous woman should be submitted to such a cruel disease. I am also angry that in the early stages of her disease I didn't understand what was going on (and nor did any of the medical profession) and why she was displaying certain symptoms of withdrawing socially, not completing chores, being constantly dizzy, falling backwards. It was only my own research that I suspected a year before her official diagnosis that she was suffering from PSP.
Once the diagnosis was made, I felt we were pushed off from the great ship NHS on our self-made raft to navigate and fend for ourselves. Parkinson nurses would listen in sympathy with heads tilted to one side, but never offer any good advise as they really didnt have any experience of the disease, and I questioned if some of them had ever heard of it as I often would have to explain her symptoms to them.
Eventually when my mother became very immobile and needed to be sleeping in an upright position due to dysphagia, I managed to find an excellent nursing home that had an experience of a previous resident having PSP. They didn't fit my mother into a pigeon hole of symptoms, but cared for her and what her symptoms where on the day. They understood the disease and understood that one treatment modality doesn't suit all.
PSPA will be the charity that I will be supporting going forward; I feel that even if I make the tiniest difference with my contributions and efforts for awareness etc it might be helping future people coming to this website to have a better supported, and compassionate journey than we and the people before us have experienced.
I wish you all every blessing and peace at this time of year, and that your journey with PSP be a gentle one.
Libby
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Dear Libby, I am so sorry to hear of your loss and the way you had to suffer watching your mother fade away. I hope that soon those hurt, angry feelings will fade to be replaced by treasured memories of before she was ill. I agree with you that PSPA is a wonderful support association for us all having to face what PSP and CBD bring with them. As you want to continue to support PSP did you know about Smile Amazon which allows you to contribute to your chosen charity each time you shop on Amazon. Take care. Love AliBee
So sorry for your loss. My heart goes out to you. I am also looking after my mum and seeing her suffer with this awful disease is heartbreaking. I know how you feel we didn't get much help either at the beginning. I had to research PSP and try to find out things myself also. Lots of love to you at this sad time. 🌹
Thank you, and I wish you and your mother all the best. If I can help you in anyway from my learning curve and my journey with my mother’s disease I will, so please do contact me. Sending you wishes of joy and peace at this time of year. Lx
I send you my sincere condolences and understand your anger and frustration. I’m thankful you found the right Home for your mum, it does make such a difference.
sending my condolences and scared of what’s to come with my dad who atm still walks /falls regularly and can eat sounds like was very hard for you at the end 🙁 you did everything you could to support your mum feel proud x
I feel very identified with your story and I perceive a lot of courage in your words.
Yes, from our experience I perceive that the most effective is to collect all the information that can be obtained, digest it and adapt it to each case that will be similar but different. Try and failure. The support of PSPA and chat partners is, nowadays, essential. Having a main caregiver who has time and some training to have some criteria and make very varied decisions with considerable frequency , as well as being able to regularly rely on a general physician, that is the goal to achieve when someone contracts that insidious disease, PSP.
So very sorry for the loss of your dear mother. I understand your anger with the medical side , they have no understanding of the illness. Thank goodness for this site and the advice of all you lovely people. Take care of yourself now, your Mum's suffering is over,remember the good times only.My condolences.
I am so sorry for the loss of your Mum. You are so right about having to figure out this disease with limited expertise from medical professionals. Your strength and determination for your Mum must have made her very proud of you. Peace and love to you.
So sorry for your loss. I am experiencing the same emotions as my mother’s swallow has also failed and she is resting, it is now day 6 of no food or fluids for her in her care home. I am grateful for finding this group as I too have had frustrations and had to find things out for myself regarding CBD. Sending love and strength to everyone going through this horrible journey. Hoping my mum with peacefully let go xx
I am sorry to read that you are on day 6 of mother's decline.
I hope this might help; this is how I managed to maintain my energy and emotions through my mother's last 10 days: I broke my day into shifts of talking to my mother about memories, members of our family, people we knew from our past plus things I had in my diary for the future, then I would give myself a break and do some knitting, or listening to audio books, or go for a walk round the nursing home garden. I would go through about 12 cycles of this through the day and it helped me pace myself, and my emotions so that I had the emotional stamina for her final moments.
I am so sorry that you and your mum are in this final stage, and I send you my heartfelt support. I wish your mum peace and hope that she drifts away peacefully.
Thank you so much Libby, I’m grateful for yesterday, my mum was quite bright after 3 days of sleepiness. I was so shocked to see the improvement, however she’s been very tired today. It’s emotionally draining saying goodbye each day, not knowing what the following day will bring. Been in the garden today and spoke to another couple of residents daughters for support. Tough that it’s happening over Christmas time too x
my mother did a similar thing about 5 days before she died. She actually spoke a few word too which she hadn’t done for a week and I was so elated. Sadly after that my mother then went into decline. I think it was her last push on life before she slowly winding down. My thoughts are with you.
I'm so very sorry for your loss, Libby. I think it's fair to say that all of us on this forum share in your frustration with the lack of knowledge about PSP-CBD by most in the medical field and others as well. But, I'm pleased to hear that you'll support the PSPA in their efforts to raise PSP-CBD awareness and to provide support and services to all affected by these diseases.
Libby! I’m so very sorry you had to go through this. I was with my mum when she died & like your experience, the last 2 weeks of her life was horrific. And the anger for me has yet to dissipate 20 months & hundreds of hours of therapy later. Please take care of yourself! xoxo Lauren
My thoughts are with you.. Having gone through exactly this in November I feel your pain immensely.. We can only take conciliation that they are free. ❤️
My sympathy to you and to those who loved your mother, Libby.My husband's story was similar to that of your mother's, in so far that I knew for two years, that he had PSP, before the medics would do a brain scan to confirm it.
Carers of PSP sufferers have to fight constantly for those they care for. Thank goodness for the PSP Association who provided information and support.
May your mother rest in peace. Be kind to yourself. God bless. Rx
Your words are heartfelt and well said, Libby. You must be experiencing a myriad of feelings right now. There must be, along with sorrow., relief that the awful suffering is over for your mama.... and for you.
My deepest condolences to you Libby and can only empathise with you. My mother lost her swallowing capability more than 2 years now and I by myself took help of a nusre and got the food pipe (Romsons rules tube) administered as she was unable to eat and getting dehydrated, used to cry saying feeling hungry but cannot eat etc etc but with food pipe we are managing until now while she is loosing all her energy, fat and muscle....she is no longer mobile and is on airbed to avoid bedsores....she is like a heap of bones covered with a skin paper....but while she lost her talking capability, her reflex is intact.....but as you rightly said Libby, it's a suffering that you can never forget in your life and it changes the way you look at life....not sure how many days she still has but trying to see what best we can do as doctors are not of that much use beyond a point. I have a question to my friends in this group. I am recently seeing that she is groning a lot but when I ask if she has any pain, she says no....so not sure why she is groning and how can we stop that. It has been 6 years travelling with my mother now and incase some one needs any guidence, you may reach out to me.
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