Rest

[Ewunia13]

My husband has been diagnosed with psp in 2014. His illness progress very quickly, lots of people suggested respite, to give me break but I feel guilty to do that. John is 60 years old, and we have been married 40 years this year. I promise him I want send him any where I look after him. To send him to respite I will broke a promise.

[honjen43]

Welcome to this forum, Ewunia13

[honjen43]

You have found a place and people who will support you and give you answers, people who understand all that you are going through, and what is likely to come.

My husband had CBD which is similar to PSP.

Your friends are right. You do need to accept help, and it should be available without having to break your promise.

You write as if English may not be your first language. What country are you living in?

Many on this site have managed health funding from the country they are living in.

You can't do this by yourself! You need to get a carer package with the help of your doctor or specialist. Others here will be able to advise you who best to contact.

I had to use respite care for my husband. I felt I was deserting him, but he survived! You need to talk to your husband about how you need a break for a few days, and that the break will help you look after him better. Hospice care seems to be most appropriate, and compassionate.

None of this caring for PSP sufferers is easy! Take it one breath at a time, one day at a time! We are here for you!

I hope you find the means and ways here. I know you will find the support and compassion!

Hugs

Jen xxx

[Ewunia13 in reply to honjen43]

Thank you Jen, I'm polish, but I leave in Nottingham 40 years. Some days is very hard. John is fantastic husband, dad and grandad, and I know it is not easy for him too.

[honjen43 in reply to Ewunia13]

My grandparents lived in Collingham! Now I live in New Zealand!

Hugs

Jen xxx

[Heady]

Hi, for me respite helped enormously. What you have to ask yourself, what happens to your husband, if you crash and can't cope anymore? Could you live with yourself then? Of course it's hard, the guilt feelings are high, put ting them into a nursing home for the odd week. I came to conclusion, it was much better part time, than enforced full time.

YOU are the most important person in your husbands life, it is your responsibility to make sure you are as fit and well rested as is humanly possible. If you need to take a few days out to achieve this, so be it. That IS keeping your promise to your husband. Over working and crashing isn't!!!

Sending big hug and much love.

Lots of love

Heady

[easterncedar]

Welcome, Euwania. I'm sorry you are dealing with this disease, You are too young for this!

Please believe this - Respite is temporary and can be good for you both. If you don't take care of yourself you can't properly take care of him, so it is often simply a necessity for your continued life together. Try to find a decent place and don't feel bad. It's hard at first, certainly, but gets better as you are both more familiar with the place. We were both very anxious the first time, but my sweetheart now looks forward to the break as well, for my sake and for the change of routine for him. He is pampered by the staff and I get to sleep through the night. It's really helpful.

I hope you are getting some help at home as well. This is not something anyone can deal with alone. I'm glad you found us, at least. This community has been a life-saver for me.

Peace, Easterncedar

[doglington]

Welcome,

I agree with all above comments.

Having some respite is not letting him down but giving you the opportunity to replenish your energy. Find the best way that suits you. Does he have any time away ? My husband started going once a week to the hospice. Found he enjoyed it.

love Jean x

[Yvonneandgeorge in reply to doglington]

You sound just like me, I promised George I would look after him, I have had restbite, you need to, it is not deserting him, you are having a much earned break, you will come back refreshed and ready for looking after your husband, listen to what the others are saying, I have been told of a few times for wearing myself out. Yvonne xxxxx

[Elaine1969]

Hello I know how you feel with the guilty part I felt the same when I put s in to respite for the first time but you will feel so much better after a break I did I cried when I left him in the hands of someone else he was well looked after and enjoyed the time away we are now about to do it all again this week xxx

[steph02]

J would absolutely hate being put into a home for repite. when my wife needs a break ferom me she will either send me awaty for a few days at a friends house or gets freinds or family in too stay with me, if she goes away. This works fine at the moment while I am still compus mentis and can still wash and dress myself, what happens when i detereoriate i shudder to think.

[doglington in reply to steph02]

That is the issue. As Chris can't do anything for himself and is incontinent it is more difficult to arrange a care with others. It is also more necessary for the carer to have a break.

[abirke]

First off, let me welcome you to our little site. We really take care of each other here and support what we can, answer what we know and ask when we don't. I knwo several things about support. It's more than just one aspect of life that needs to be held up on these arduous days. We forget our own lives and forage through to our loved ones lives. Unfortunatly we have to stop and feed whatever it is within ourselves. Healthy food plenty of water and a little bit of wine seems to go a long way....but then there is the body that needs to be walked and exercised....as I have found out , even raking causes me pains that 4 years ago would not have even been considered! The emotional need that we go through as our loved one goes deeper into their illness (and every other aspect of life that happens around us) that's why you have us....we'll be hear for you. And finally the spiritual part of our being cannot be neglected. if your a praying person, you know how good that is for you....You need the Lord to know you and be by your side so remember the spiritual body as well.

The hospice nurse encouraged me that even if I only stayed with my husband, it would still be soemwhat of a break for me not having to do it all by myself....I never chose that path but I did have an aide come in 2x a week, and B really appreciated the showers without the extra stress....I have to admit she was better than I was in that she came out about as dry as she went in. I, on the other hand, came out about as wet as he came out!!!!hahaha

Give yourself a respite moment; even if that moment is with your husband.

May you have peace in all aspects of you.

AVB

Lord thou wilt ordain peace for us: for thou also has wrought all our works in us Isaiah 26:12

And let the peace of God rule in your hearts, to the which also ye are called in one body be thankful. Colossians 3:15

[Ewunia13]

Thank you all for your comments, I really appreciated.

[andrewij]

Promises are sacred to me also, however there are exceptions here. There are more than one victim, you are one of them. Do not feel guilty, you must do whatever you feel is best for both of you. No-one will judge you badly here.

[Julieandrog]

Hi

My stance is this is a personal choice, but for me if I did not get respite on a regular basis the whole situation would cascade down. Yes it's hard but I have live in care when I go away safer all round

Have a calm day

Julie x

[Duffers]

Hi ewuania. Find out where your local hospice is and go in and ask to speak to someone about their day care and tell them your husband's story. I did this and then via our GP i got him in. Only 4/5 hours per fortnight but its a start and not too upsetting. The staff in hospices are absolute angels and your husband will soon get to know them all and be content to go there. Give it a go. Nothing ventured, nothing gained. Good luck. Marie

[Kevin_1]

Hi Ewunia13

Welcome.

I have not read the other replies, because they will say what I am going to say.

I really just wanted to welcome you here. Its a good place for support and information.

When I can no longer cope my Liz goes into respite. We miss each othere dreadfully. I know she does not get cared for as well as here and that she does not get enough showers and the food is poor.

But, because she goes in once in a while I continue to be able to cope and keep her at home. Absence does make the heart grow stronger too.

It is not at all uncommon for carers to reach a point where they can no longer care and that home becomes a bitter permanence.

Rule 1: To look after your husband you have to look after yourself and its still tough!.

Wishing you both the best and yes, it is a heartache.

Warmly

Kevin

[Ewunia13]

Thank you Kevin for your replay. Do you have to pay for restpite? I have got some forms today, from day centre to one of the local homes, but i still haven't make up mine mind yet. It is very hard for me to do it.

Kind regards

Ewa

[SuzeHope]

Hi Eva,

My mum has been going to a local hospice 1 day a week for 12 weeks now, which is a block that they provide after referral from the doctor. This has been a god send to Dad who is the main carer, and although mum didn't like it at first, and felt she was being 'shipped off', as time has gone on she has built a relationship with the other patients and staff, and enjoys a day to do something different. Unfortunately the 12 week block finished this week She now however does an afternoon art class on a different day also with the hospice that she really enjoys. It all gives my dad precious time to have for himself, and to breathe. At the moment I'm more worried about him than her. Mum doesn't sleep well, and my dad is just exhausted. Mum is actually going into respite today with the same hospice, and I know she is anxious about it, but dad needs the time to rest and recuperate. As I've said to him, if he ends up dropping from exhaustion where would mum be then??

The fact that we don't really know what this week holds in the hospice is hard, but we've arranged visits from people and mum still has access to the day centre (on certain days) and complimentary therapies. I hope she will be fine. She and dad both think that she will just be drugged for the week, but I keep reassuring them that this is a very old attitude to what goes on in a home. Fingers crossed!!

I will let you know what happens, but please don't feel guilty. To be able to look after you husband you really need to take some time for yourself, not only to do the things that you enjoy from time to time, but also to recouperate.

It is a horrible situation to be in, but to have you to be there with him is amazing Xx

[honjen43]

Hi Ewa

I know it's a lot to handle on top of the worry. Look at the options available for respite care carefully. Some will be better than others and only time will tell if you have a good place. If Hospice is available they will have the understanding and the carers to help. I found that the Resthome situation did not well fit but it was all we were offered. Many homes here seem so short of staff they are not able to give enough time to care. Tho we had carers who even came to comfort in time off!

Hope you are close to a solution! Hang in there!

Hugs

Jen xxx