PSP Association
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Desperate times

So my dad who is the main sole carer of my mum who has PSP has broken down and admitted that he can't take anymore 😢 I don't blame him.. he has been doing a fantastic job, but as you all know on this site this disease is relentless. He is exhausted beyond belief. Mum needs 24hr supervision. She had another nasty fall on Friday trying to get out of the specialist chair she has.. constant howling. I know he is at the end of his tether but is now seriously considering full time nursing home. I feel like we have given up😢😢😢 I would give anything to have my wonderful mummy back. My heart is breaking 💔💔💔

13 Replies
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It is heart breaking.

Your Dad has done extraordinarilly well. This sort of caring will break the strongest loving folk. Even with home care input.

It sounds like it is falling on you. The pain of seeing your Mum suffer and the same again as you watch your Dad struggle.

My heart goes out to you all.

Warmly

Kevin

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I think that is good that your dad has shared that he CAN'T handle the care-taking. Far worst to have a health breakdown because he has kept his needs to himself. I have a close friend who is a gerontologist (MD) and he often warned me that care-taking could take my health and then what would my son do? Support your dad in any way you can....economically to hire a care-taker, contributing a few 24 hour periods of your time.

I know your dad is probably feeling some GUILT. IF so, please help him to understand that she will be in better care....If you have access to a full time nursing home, take advantage. He can visit her each day, 8 hours a day, but now will have others (and he can still help when able) doing the feeding, the cleaning, the bathing, etc. He can go home each day and get a full night's sleep.

This is good....for his health and probably for your mom. Your dad will know that he did all that he could, while he could, but now he needs help.

Prayers sent your way for ACCEPTANCE.

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The howling is difficult to deal with. Your poor dad. Maybe, you will now be able to go back to being a daughter and your dad can be a husband instead of an exhausted caregiver. That's not giving up! You are redefining the situation and you'll be OK🙂

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I think looking after someone with psp is a very hard job, feeling exhausted most days not being able to sleep, so happy your dad has been honest before he had become ill himself horrible horrible illness. Find a good care Home for your mum, and your dad can visit her everyday and she will get the care she needs. Yvonne xxxx

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Everyone of us forgets the most important job, when looking after our partners. To be the husband/wife that we promised all those years ago. Tell your Dad, he hasn't failed, it's just time to go back to the day job. Being a husband to your Mum. That all she needs now.

Lots of love

Anne

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Unfortunately , I think this time will come for most of us. Caring for someone with PSP can be a an unbelievable struggle and sometimes impossible. One of the most difficult things is to realize things have gotten beyond our capabilities . How wonderful that your dad has the strength and insight to see now your mum needs more .

Our children would also give anything to just have a conversation with their dad. It has been such a whirlwind it’s hard to put our heads around all that’s happening. I’m so sorry you have to go through this with your wonderful mum.

I hope your dad can feel proud of how he cared for his wife and now proud that he recognizes what is best for her on the next part of his journey.

Good luck to you.

Karyn

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I love the wisdom of this group :-) As Enjoysalud says, your Dad can spend as long each day as he wants with your mom in the nursing home, and no doubt when family visit nursing homes frequently, the staff and supervisors know it, and your mom will be under good supervision. And he gets to have a normal sleep each night so he can be fresh and strong and loving for her when he sees her!

I echo her message to you: Prayers for Acceptance

Hugs Careen xxx

Anne G.

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You definitely need to look into care homes. You are not giving up on your mother. She will find it less stressful not to be a burden on your father. I thought my father would hate to have full time care and he seems much happier and better looked after - its just not possible for one person to do all the caring when it gets more demanding.

You have to look after both parents, not just your mother. The stress of PSP can be very damaging. My mother has been diagnosed with cancer after 5 years of looking after my father and I can't help feeling that it has been the stress of looking after someone with PSP that has brought it on....

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Hello all, I don't normally respond on this site although I do read regularly. I have cared for my wife of 51 years on my own up to a few months ago when I nearly reached crisis point on three occasions. When I let it be known to all and sundry they suddenly realised that they had to do something quickly. I had been waiting for 18 months for some carers to come and help me. I have at last got carers coming in. So I do understand where your dad is.

Just a thought, very early on in the diagnosis I did ring the council social services to request an assessment of need for my wife and also for myself as the carer. I have had regular reviews and at the moment have a very good Carer Support Worker from the long term team. I can contact her whenever I feel a need and she will help me to get to whoever is able to deal with my needs. So if your dad hasn't gone through this process it could well be that even now he would get some benefit. It's never too late to get this. I hope that everyone goes down this route, we as carers need all the help we can get to cope with it all.

Best wishes and kind regards.

Yorkbaldy

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Hi great advice here..

Never felt so grateful for the NHS before. My mom was in a desperate position with our dad and we were looking at funding 24/7 in-house private health care between my brothers and sisters. My dad and mom were adamant they didn’t want to go down the 'home' route. Among us siblings paying approx. £20 per hour for care soon adds up.

We soon spoke to our social services and were provided with a live in 24/7 carer as well as 2-4 drop in service per day. We additionally had a night carer who would come and watch over dad at night. All for free. We received great care and have kept in contact with these carers after my dad’s passing who have become second family to us.

Getting the live in carer was a huge came changer for us. As this was the turning point with Dad. It also helped compliment my moms support as even with all these hands on deck it felt like there was still never enough. PSP is really testing as you know.

My mom was so against having live in carers originally but we looked at the facts that research shows it always the partners health that deteriorates in line with said patient. She was grateful for it in the end and found it a blessing to have another person to lean on as well as family.

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Hi Careenh!

Your father has found his limit. It is normal for a person to wear out and reach his or her limit while taking care of a sick person. He has also had the courage to communicate to her family members that he has reached his limit. We all have a limit.

The person who gives everything he can in each moment can not be asked for more. To go further would be to enter the field of saints or martyrs.

In my opinion, as far as it is possible, the best place for PSP patients is their own home. This entails the need for other assistants to help the main caregiver and the capacity to cope with the considerable expenses that this general. It also demands a reasonable good health of the caregiver since the management of all the tasks that it carries out with it produces a remarkable fatigue physical and psychic. In principle and in my opinion, the limits I have set to send the patient to nursing home: dementia, very aggressive behavior, the need to apply specialized medical care, if the patient's needs became more complex and persistent so it could hold up at home and last but not least chronic fatigue in the caregiver.

I have read suggestions in this "chat" very sensible.

Possibly your father has reached the point of "chronic fatigue." You must find a solution for all, mother, father and you.

Hugs.

Luis

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I believe assisted living would make most sense. My dad was taking care of my mom all alone but it was too much. We have a full-time attendant who now looks after my mother and dad supervises her.

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Hi Carennh.......know exactly what you are going through......PSP is s..t,,,,,take care x Gerry

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