Dear all, I’ve never posted before. My husband was diagnosed with Parkinson’s in 2013 and with PSP (finally) in 2017. He is a bit of a miracle - but that’s taken huge effort on my part - we keep him fit with exercise and physio. His swallow is now really failing and he is now on a puree/liquid diet. But he’s still just about walking as I have live in carers (I’ll worry about the money after this!). But I’m exhausted - running around trying to manage the services we need and doing the waking nights if needed. My Mum also died this year, so grief all round. Sorry this is a bit negative - but I’m tired of living with the unknown, with fighting and will a lack of support from friends who can’t cope. I think we have the hardest year ahead and I’ve been reaching out to the Hospice etc but resources are so overstretched that they will give more support at the palliative stage. I really need to recharge so I can go again (if you know what I mean). Can anyone relate? Thanks in advance xx
Bone tired: Dear all, I’ve never posted... - PSP Association
Bone tired
Dear Toddet - you have done an amazing job and your husband has made it through so many hard days / weeks / years thanks to you. It's not surprising that you're tired, it's a miracle you're still getting up in the morning. Don't ever be hard on yourself.
I lost my husband 25 days ago. We had 3 1/2 years after the diagnosis and I can relate to how you feel - when you're running on fumes and the help you can get is nowhere near enough. It's going to take me a very long time to get over the physical exhaustion - not to mention the mental fatigue and of course the grief.
I'm surprised you don't appear to have CHC funding - that would pay for care and for full weeks of time away for you if you wish. Surely your husband would qualify - but I also understand you may need to conserve your energy and pick your battles carefully. My husband was qualified for CHC since May this year but I've not been reimbursed a penny yet.
You mention "the hardest year ahead" and I have to agree with you - though timelines with PSP are unpredictable it never seems to get easier 😢. I wish I could give you advice that would "fix" the situation and I can't.
I'm sure you already know you need to be kind to yourself and spend some time looking after yourself - I'm sure you've also pushed past the reluctance to accept genuine offers of help. And I'm sure you sometimes remind yourself there is a life for you after PSP and that you can't cut yourself off from the world.
I always knew I was the "expert" on what my husband wanted and needed, and that he would want me to be there for him when things got hard - if I was strong enough. So I would be strong - or pretend to be - and try not to show him how close I was to breaking. I believe you will do the same. There are always virtual hugs for you here when you need them 🫂
Sincerely, Bergenser xx
Many thanks Bergenser. I am so sorry for your loss, you must be so tired. Thank you for replying - you understand so completely. It’s hard to explain to others how exhausting caring for our loved ones is …. Sadly it’s only those who have been there!
Re CHC - the PSPA have said we can apply for it but its got stuck with miscommunication with the Hospice and I’ve also been told that we probably won’t get it due to us already paying for our care. Just trying to recharge my batteries to deal with that in the NY.
Take care of yourself - again thank you for replying, I desperately need to be heard this morning. Love Toddet xx
An interesting point about the CHC process that I picked up on while trying to get my head round it for my husband’s reassessment is that when identifying needs - even if those needs are already being met - eg by family member administering medication or helping with physio - those needs still exist and therefore need to be included in the assessment. As we went through the criteria with the nurse doing the assessment I pointed this out to him in a couple of instances and he thanked me and agreed. I don’t know how things work with CHC if you’re paying for care already but it’s seems to me that there are care needs there that are being met but nevertheless need to be included as needs in the assessment
Many thanks - really good points appreciate your reply xx
Hi Toddet!
I agree with Bergenser's considerations.
The care of the caregiver is essential. If the main caregiver fails, the system collapses.
I am sending you some thoughts on the care of the caregiver via the internal chat.
A big hug.
Luis
Many thanks Luis - really appreciate your detailed reply xx
Hi Toddet fully feel your exhaustion. Would it be possible to arrange some residential respite. My mum had 2 weeks in a care home last year whilst there was some building work in in the house and I know I’m entitled to a bit more (want to find a better care home as previous had no activities so I visited twice daily!)
I’m lucky to get 3 hours carer respite per week via a charity called Crossroads. I’m not sure if they are U.K. wide but wouldn’t be surprised if there’s something similar in other areas. Have you looked at carer support in your area? The carer trust may be of help/use
carers.org/help-for-carers/....
Dig deep into your energy reserves and try to arrange something for you.
Many thanks I’ll have a look at the web site xx
Toddet, You mention CHC and you think you will not get awarded it because you are paying this incorrect if your husband achieves the necessary scores on the 10 Domains you will get it. Also it is possibly to get some payments refunded but that is another story depending on the date which it is awarded from. To achieve the necessary Eligibility Criteria is quite daunting but can be achieved. I have looked after my wife since she was diagnosed with CBD in 2016 . We applied and it was declined but on applying for a Review Of Previous Assessed needs after 6 months we where successful. You need all the the support you can get when applying get advocates form all the various professionals you are in contact with. Hope this helps as I know it is not a walk in the park being a full time carer. Check out Care to Be Different web site can be helpful. Barrie
Many thanks Barrie - I will have a look take care xx
Does the hospice offer respite care? I have PSP and went in November for six days (classed as a week - I guess they need a day for turnaround). If not, can you maybe look elsewhere? It helped us (my husband and I) to have a short break.
many thanks - the Hospice do offer respite care, but we haven’t been offered this - I’ll talk to them in the NY. Xx
Hello Toddet,
I feel your pain and can relate to this so much. I think your doing an amazing job, in the midsts of intense facets of grief, so in no way is your post negative, its brave and realistic. And also well written, my tiredness make my writing a bit jumbled and incomprehesible!
It's one of those, if you know, you know...
I care for my Dad who has CBD, you're right its 24/7 exhausting. We dont have any other proper carers, but an hours help with a few light chores, 5 days a week from someone who needs support themselves. I'm 200 miles from home so support network is remote. I think of it as surviving and managing to drag us from one day to the next...and I anticipate the hard times to come.
When did you last have time off? I find by week 5, thats the hardest with no time off, especially if we have no visitors or phone calls. Luckily at the moment, I have a friend who has been able to come to look after Dad since September, for a few days every couple of months or so. She's happy for the extra cash and I trust her totally.
I dont know what your services are like where you are? They are over capacitated and failing here, we often get forgotten, so more than 50% of precious energy is wasted chasing providers! Are you referred to more than 1 Multi Disciplinary Team? We are now with both the Neuro team and the Local Primary Care Team. We are lucky that we have an super human Occ Thrpst with the district Neuro Team, we would not have survived physically or mentally without her. Her refferals to other neuro services have been invaluble.
My Dad was involved with a research program at UCL and the consultant up there nudges services down here, and got Dads GP to refer us to St Barnabus hospices. They also unfortunately dont do respite as they used to, but they do provide in home hospice care, which includes myself as a carer.
We had the nurse round for a first chat the other day, they also provide counselling and alternative therapies amongst other things. I know the counselling covers the carer, I'm hoping I can get some physio or similar to. Its not just the running around, caring is physical too. Maybe ask your GP (or another HC proffessional?) to refer you to another local hospice? One that provides in home support? Once that had been triggered, we were seen pretty quickly by a nurse.
We've had 2 CHC assessments over the last year, I knew that there was no chance on the first, and the 2nd, very slim as primary needs scored low in several areas. For the CHC MDT round here, the emphasis on Clinical need over Social need is key. It should not matter where we are, or who deals with the assessment application, but the term "primary" health care need is very open to subjective interpretation, I guess this can work in ones favour? We started to see this as a posthumous chore I'll probably inherit!
Oh, just read below... not sure who told you that you probably won’t get it due to you already paying for care, but the Continuing Health Care fund is not means tested, unlike Local Authority funding, so I believe that to be incorrect. Basically its a tiny pot to go round, so I find theres an amount of smoke and mirrors to distract you, and also some HCPs are jusy unaware of it.
Sorry, I've waffled here, not sure if I've said anything usefull 🙄😬
Sending virtual love and light
Niknak x
Many thanks Niknak
You are absolutely right about breaks - I had one just over 5 weeks ago and am exhausted again! These illnesses are very draining and incredibly mis-understood. I looked after my husband for 10 years on my own and have had live in carers for 18 months - but still do about 7 hours or more a day and also look after him at night when needed.
The services and very under funded here and they do their best, but discharge us after every intervention, but our OT is fabulous. Everyone wants to help more but there just aren’t the resources.
Our Hospice is supposed to be looking at CHC for us but have managed our expectations as about on 1% of people who apply actually get it in this area!
I am going to book a few weekends away shortly and that should help. I am also grieving for my Mum and probably carrying a lot of grief for why my husband and I have lost and anticipatory grief for what is to come. But - we have to push our shoulders back and paint a smile on our faces for our loved ones.
Take care xx
hello Toddet
by reading your comments I exactly know how you feel. I take care of my wife diagnosed with CBD in 2017. Literally she"s only able to eat by now. Since a month I have a personal assistant nurse in house taking care of her 24/7
This is a big relief for me because this disease sucks the life out you as a caretaker. If you"re able to realize a private caretaker in house, certainly do it.
thank you for your reply. Sadly these illnesses are exhausting aren’t they. I will take on board all of the responses. Take care and go gently x
you have my deepest sympathy my wife has zero mobility her speech is getting worse and she is fed up with living in a chair I have been caring now for about seven years and feel I no longer have a life to call my own and get very depressed and tired but I will not give in we have carers morning and evening that cost a lot of money for what we get I don’t think this reply will have helped you much but we are all in the same boat my retirement ten years ago has not been what we planned for but I am confident that my care is better than anything a nursing home can give sorry for the personal rant life is a bi**h
Orange army I am so sorry to hear that you are struggling too. These are the hardest illnesses to manage and the impact on us as carers is immense. Take care of yourself. Xx
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