Hi Im new to posting on here but have gleaned a lot of advice from all of you in the last few months. Now im lost. I used to live with my son but gave up work two years ago and moved in with my mum who has psp full time. I still went up a couple of times a week to do my sons laundry and a bit of shopping and housekeeping. I hadnt heard from him since thursday and was getting a bit worried so went up to the flat to check that he was ok tonight and found him dead in his bed. Ive been dealing with undertakers and police (my son was in his thirties and his death is sudden and unexpected) my niece has been sitting my mum but now Im back and alone with her and shes crying all the time and saying that it should have been her and Ive tried calling the care company and cant get through and i dont know what to do. I think Im still in shock and Im trying to keep it together but I feel as if my heart has been ripped out and torn up.
I dont know what do do: Hi Im new to posting... - PSP Association
I dont know what do do
What a tragic set of circumstances. Firstly I am sorry for your loss. My advice is that you should take some time grieve. Get some help or respite care for your mum so you can have some space. Get as much support from family and your closest friends. I am sure this is easier said than done. I am in NZ, but I am sure you will get more direct advice from the UK posters. Again, my heart aches for you. I am so sorry.
Thank you for replying. My mum has finally gone to sleep after many tears. I have tried to get some extra help but have been told that there are no extra staff available. thankfully my two other sons and my amazing daughter in law are all going to help get everything arranged for me tomorrow. Actually having to look after mum tonight has been a comfort and I told her that I was so glad she was here because she also lost her son, my brother ten years ago and she knows what Im going through right now.
lovely. so good to hear your kids are there for you and can help share an unbearable load. Your mum sounds beautiful that she can be there for you when she has PSP. All the best for the coming days, and keep posting.
thank you. i really am thankful for your taking the time to reply to me. my mum is a wonderful person.
I am so sorry to hear about your loss, what a terrible trauma for you to lose your son so suddenly, and to be in the midst of caring for your mum too. I’m glad your other sons and daughter in law are coming to support you and that being around your mum has been a support too. I really hope you can find some time for yourself, this is a huge shock and there’s no rule book for how you will feel and when, just allow yourself to feel what you feel and look for ways to comfort yourself. Also, just thinking… maybe you could contact your local authority social care team to see if they could help on an emergency basis?
I’m sending you love and prayers.
thank you for your kind words and advice. Im in scotland so today is still a bank holiday and thats complicating everything. My son amd daughter in law are on their way thank goodness. because mum is now awake and shouting every 10 minutes that it should have been her. I do get a carer at 8.15 am and im going to ask her to try and get in touch with head office as thats all the help I normally get and I honestly dont think I can get through today without extra help with mum and it was impossible to get through to them yesterday or mums care manager. Ive spent the night thinking about my son and feel lost.
I am in UK (my wife had PSP), contact your social worker through social services or get your GP to contact them as a matter if urgency. The social worker can bring in all the essential support. Another route is to ring up the PSP Association helpline 0300 0110 122, who can let you know of all the local support services near you. If not already, you should register with them to get regular support. 🙏🙏
thank you for your kind words and advice. I will try that number today if I cant get hold of the care company.
Hi Dorajinx16!
Tremendous. The pain for the loss of a child is brutal without measure. I'm very sorry.
You will end up finding strength and help to take care of a PSP patient, which is a tough task. Courage and hope.
A big hug.
Luis
thank you Luis
Praying for you. 🙏
Thank you Kasenda. Ive been on the phone to arch as council offices in scotland are still closed. They have agreed to send me extra help afternoon and evening tonight. Im finding it diificult right now because mum is so upset and I dont want her to see me upset.
Prayers for your loss of your son. I've experienced huge losses as I've cared for my.loved one with PSP. My sister in law 36 years old and several others unfortunately. And had to keep going if your mum is in hospice care they have great resources. Wishing you the best! May God give you the comfort and guidance through this time
My mum is still at home with me and I care for her most of the time with carers coming in at 8 am and 11.30 am. Thankfully an emergency service has provided me with extra carers today and through the night if I need them. My sons and daughter in law have been a real comfort today and my youngest one is staying the night with us tonight. Hes sitting with mum just now and shes calm now which is a blessing because Ive been struggling to keep it together. My middle son was a beautiful human being and I dont think I will ever recover fully from his death. I want to thank all of you on this forum today. Reading all your kind words has been such a comfort. This is the first forum I have ever posted on and I obviously chose the right one!
Tragic. So very sorry for your loss. Hugs and prayers.
Tim
thank you so much for replying
So very sorry for your tremendous loss. It is good to know that you have managed to get some extra help for your Mum this afternoon and evening. Keeping you and your family in my thoughts and prayers. A big hug, Purrlie
Thank you. I need all the hugs I can get right now
I'm glad you've got family to rally round. What a dreadful 24 hours for you!
The police may be able to point you at the support you all clearly need - where to go to ask for help, but otherwise, I found a site that flags 'NEED HELP NOW? CRISIS SUPPORT FOR YOU AS A CARER', with the phone number FREE phone: 0808 801 0414 Text: 0797 442 9075.
It's based in Edinburgh, but they may well be able to help you find where to get support in your area.
Also, your doctor, or social services. Do you have a local hospice that might offer respite for your mother while you cope with the rest of life for a few days? She probably won't want to go, but you might be able to persuade her to do it to help you out?
It is very acceptable to make a noise, shout for help etc especially in the immediate aftermath of such a crisis. You are allowed to be shocked, overwhelmed and unable to think clearly!
A big hug.
Thank you for taking the time to reply. Thankfully I am now getting the extra help I need
Hi, I am so very sorry to hear your very sad news: you must be devastated. You must try to take some time for yourself to deal with the loss of your son. I believe that you are in the UK. If so I suggest that you contact the Emergency Social Services [not during out of hours though] and explain the need for urgent respite care as you are at the end of your tether. I think from your post that you might already have care help in place which should help but they do have rapid response teams who can step in. You will need to tell them that you cannot manage as if they think you are coping the help is not always forthcoming. In the meantime I am so glad that you have reached out to this community and posted as it is like a large International family and all will be here to support you even if only by posting. Take care. Big hug. AliBee x
Thank you for replying to my post. Arch have been fantastic and provided extra carers for me today and said I can call them through the night so atleast mum is being well cared for.
My thoughts are with you during this devastating time.
thank you. I really appreciate the support Ive had from everyone on this forum today.
Hi, Its great to read that you got some extra help. What about over the coming days. Do the support agencies understand the very tragic circumstances you been presented with? You will need a bit of time to come to terms with this and grieve for your son with your other childeren. Thinking of you.
I am so sorry for this devastating loss. You will have so many questions in your head at the moment, and of course your mother is grieving too as well as any existing cognitive problems because of her disease. Have you contacted her GP as they maybe able to prescribe a sedative or something to help calm her, which will relieve the stress on you too. Are you registered as a carer with your GP and do they know the situation? Does your mother have any friends who might come and sit with her? Don’t be afraid or ashamed to contact your friends, your local church or other religious organisation (even if you aren’t normally religious -they are good at pastoral support) or any local support charities to help you and give you someone to talk to as well.
My other two sons and daughter in law have been a fantastic help and comfort. Also my brothers late wife has now offered to travel up once a month to give me a break. My mother trusts her so this will be a real help. You really find out how much love is around you at times like this and I appreciate all you on this site. Your words and advice have really helped
What a tragedy. Am so sorry for your loss. Am glad others here have come up with suggestions and hope they help in the near future so you can all grieve, it sounds like you've a beautiful family. Thoughts and prayers.
Thank you
I am so sorry for the sudden death of your son. My prayers go out to you and your entire 🙏family . Remember to take care of yourself too...
Thank you for your kind words
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