Respite Care

Larry is off for five days of respite care. I need the break but it broke my heart to see him loaded into the ambulance and taken away. Came into the house a broke down hysterically crying. Part of that is the release of the four years and seven months of tension. Never being able to let my guard down things have built up. If nothing else opening the flood gates is helping me. This is a taste of what I can expect when he dies. I am not liking it.

[AliBee1]

Dear Jeff. Nothing we can say will make it easier as I know it hurts so much. Such a big hole. Crying is a big safety valve so it is good that the flood gates are opening. I know you feel this is how you think you will feel when he is gone but I found it was quite different because I knew that Nigel was at peace and that he had not had to leave me because I so needed the break. Please try to do some things that you have missed doing in the next few days knowing Larry is being well cared for, even if it is just relaxing in the bath or taking a long shower during the day, or staying in bed if you do not want to get up, or having a drink as you do not have to be respomsible or having a meal out. Enjoy and recharge. Big hugs. AliBee

[Yvonneandgeorge in reply to AliBee1]

Jeff thinking about you, but you so need a break, try and enjoy some me time, 5 days goes very quick. Yvonne xxxxx

[Tippyleaf]

Dear Jeff

I do understand how you feel had exactly the same experience when my hubby went into respite for his one and only stay.

I rang every day but was advised not to visit.

Please do try to use these few days to sleep rest have some fun - lunch with friends etc. So you are fighting fit for Larry’s return.

Rest well

Love Tippy xxxx

[doglington]

I felt the same. I sort of suddenly saw the reality of how it is.

As Tippy says - make the most of it. It's happening and is an opportunity for you to refresh to the mutual benefit !

Love Jean xx

[enjoysalud]

Big hug!

[Kevin_1]

Oh, Jeff

Yes, to what you say.

But, sleep some now.

Make sure you go and see some friends. Go to the cinema... anything to refresh yourself.

Yes, it is something of the loss to come, but he needs you refreshed right now.

And, so do you.

Do take care of yourself and don't do what I did on respite breaks. I just slumped. I did not use it s an opportunity to refresh.

Take care bro'

Kevin

[NannaB]

I felt terrible when C had to go into a home when I hurt my back and couldn’t dress myself, let alone C. I hadn’t felt like that since leaving my eldest son at playgroup for the first time, or even my dog in kennels. Like AliBee, it was not at all like that when he died. It was a relief knowing my darling was no longer trapped in a useless body and as he had a strong faith and knew where he was going, he had no fear and wanted to go, although he didn’t want to leave me. He told me this when he could still speak. Everyone is different. Those with PSP and those who care for them. I couldn’t send C away again as I didn’t want that feeling of sorrow and feared I wouldn’t be able to cope on his return, I found it difficult that first time, getting back into the routine but I did get out and do fun things during the week when I had sitters in and when he went to the day centre at the Hospice. I also invited lots of folk into our home. I never felt the need for other respite and we went out together regularly so both had a change of scenery. We must all do what is best for us individually. I hope you can relax soon. Time will fly quickly so make the most of every minute. Go to places you can’t get to with Larry. Visit friends or family who you know will make you laugh. You may feel awful but folk tend to steer clear of us when we are miserable. It’s hard sometimes but if I was with others, I tried not to mention PSP and asked them about their lives and families. I could visibly see them relax instead of worrying about what they should say to me.

I hope after this 5 days you feel refreshed and relaxed.

Love and best wishes.

XxxX

[journeyofjoy]

Jeff,

I had a session of hysterical crying one day (right in front of my husband, unfortunately). It came out of the blue and I sobbed until there was nothing left, face down on the floor in a puddle. I did feel like it was a huge release and I could begin again. I am glad that you feel that it was a release of tension.

I am so glad Larry is off to respite care. You need care yourself. I hope you get lots of rest and hopefully some joyful moments during this time.

He will be back home before you know it. Be good to yourself.

[easterncedar]

So familiar. Big hugs, Jeff. Rest as best you can. Be good to yourself. Peace, ec

[Dickenson2]

It is way overdue for you to have a break and just make sure you do

some nice things for yourself . Try not to visit as it could unsettle Larry and he will be well cared for. Five days is such a short time xx

[Melhukin]

Big hugs x

[AnneandChris]

Dear Jeff

You are doing wonderfully, so enjoy the next few days, it will go so quickly, but, it will do you both good. You have such wonderful advice from everyone here so take heart and rest.

Hugs

Anne

[Northstar1]

Love and hugs to you Jeff xxx

[Lillipilli]

Dear Jeff, the way you go with Larry looks so much like the way I go with my Jan. There have been so many similarities every time since I entered this forum, now a year and a half ago. My husband was admitted yesterday for 10 days respite care. I was in such a state, had asked for it a few times, but when it was awarded last Monday, it was actually such a shock and sadness that I had to do this to him. But Jan himself indicated that it was for my good. I brought him away myself and installed him in his room. How quiet it was when I got home, I also imagined that it might soon be forever. I fear that moment. The people in the nursing home are all so sweet to him, he is well looked after. I'm looking forward to the peace and quiet now.

[Hidden]

Jeff my heart is with you and my best advise is sleep whenever you can (no matter the time). Also cry and/or scream whenever you need to & have coffee with an understanding friend.

I used to have fly a kite on my list, but had to give that one up. Make your own list... would bake cake still be on your list? I almost gave up baking cookies but l missed the yummy smell in the house. Sending you lots of understanding hugs... Granni B

[Heady]

Hi Jeff, as you can see from all your replies that we are all so glad you have got this break. You need it so much! Of course you cried when he had gone, we all have done that. Cry some more.

I considered respite as part of Steve's treatment and for him to get away from a tired, haggered old bat, that was not capable of doing anything for him. During his respite trips, I would sleep, go and visit family, eat out, drink, generally do all the things I couldn't normally do. I did go and visit him a few times, dressed up, trying to look pretty and ONLY at times I knew there would be no caring, in other words, just being his wife. Which believe me, was the best medicine ever invented for both of us. When he came home, I was a new person, ( well for a few hours!)

Yes it will seem like a rehearsal for later, that's OK, take some notes! Have I cut myself off from the world? If so, you must find a way to get out a bit more. Why am I so tired? Because you are not getting enough rest, get more help in NOW! Why am I so emotional? You are not letting yourself show your feelings, find a safe place to do so. I went regularly to a counsellor, during this time, certainly helped me.

Jeff, you are the MOST important person in Larry's care plan, he is totally dependant on you. Don't let him down, use this time to recharge your batteries, in what ever way suits you, nobody can do what you have to, running on empty. The first few hours, when he gets home, will be hard, but after that, you will be glad to see him and ready for everything PSP throws at you.

Oh, and don't forget to book his next stay!!!

Sending big hug and much love

Lots of love

Anne

[Dance1955]

Hey Jeff I is this your first respite ?

Yes I cried the first time Ken went in now I cry when he comes back lol just trying to cheer you up a bit

just enjoy you earned this 😊

[Hidden in reply to Dance1955]

First one. Hard to give up control even though I knew I had to.

[Caro2132 in reply to Hidden]

Hope you are finding stuff to do and keep you busy. Things you can’t do while worrying about Larry. I am also trying to find out about respite facilities near us. Take care 🤗

[Hidden in reply to Caro2132]

There’s lots to do. I am getting the 380 bulbs I ordered planted in a bed I see from the kitchen window as I stand at the sink. Something to look forward to.

[Hidden in reply to Hidden]

380 Wow! Great idea... they will be gorgeous. Being outside always makes me feel better... l bet you are the same. Daylilies need separated here... if we were neighbors l would invite you over for coffee & ask you to bring your shovel. They are lovely & l love sharing them. Sending hugs... Granni B

[Hidden in reply to Hidden]

It sounds like a lot of bulbs but it isn’t once in the landscape. It should give me what I want. Also something to look forward to in spring. The rest of the garden is chaos. If I am lucky I will have it cleaned up by next April.

[journeyofjoy in reply to Hidden]

I have to get my bulbs in too. Tulips are my favorite. Planting them is a sign of hope....you are counting on spring coming. Enjoy and don't worry about the rest of the garden. It will wait for you.

[Hidden in reply to journeyofjoy]

The bulbs are in. Hurrah! Only as I planted them did I find the daffodils are the May flowering variety. The tulips are also May. Should be a nice view if it happens.

I put two hundred species croci on top of them. They will be up in late winter depending on how cold it gets this year.

I kept 20 tulips to pot up then winter over wrapped up outside for the winter. I put them in the front south facing steps and bring them into the house when they flower.

[journeyofjoy in reply to Hidden]

200 hundred species? Wow! I want to put a bunch of cyclamen in. Will get those from a friend's garden.

Isn't it great to be outside and get your hands in the dirt? Just stepping outside brings my stress level down.

Have fun gardening! it's good for the soul.

[JantheNana]

There is really nothing I can add to all the above but I just want to send my good wishes! Love❤️!

[Hiking13]

I agree with everything that’s been said - you really need this break. Take some well deserved you time and definitely meet up with friends as you will need your friends so much at a later date, my friends have been simply amazing since I lost my lovely Steve. But try and focus on you now and try not to compare to how think it will be in the future because it isn’t like anything you think it will be and I actually don’t think you can imagine until it happens so push all those thoughts away and enjoy your days to yourself and enjoy every money together when he is back

Sending lots of love and hugs

Love Sarahxx

PS Have a good cry too as it’s good for you I used to sob for the first mile of every run I went on - I still do sometimes!!

[Cinnylou]

I have to pick up my hubby tomorrow from respite care. Coming home to an empty house, I still found myself pushing to finish one task so I could hurry on to the next one. Had to force myself to slow down and breathe! No schedule to keep for 5 days 😁

So today is my final day of “me time”. Truly debating whether I really want to sweep up the dog hair tumbleweeds in my living room. Lol. The break has been much needed. Hoping you’re finding a way to enjoy yours, Jeff!

Cindy

[Dance1955]

Hi Jeff I remember ages ago you said when you go to the shops and if people stop to talk they got the quick word or something go and have a coffe or lunch with a friend the week will go so quick please try and enjoy it 👍

I always think the respite helps me keep my husband at home or a couldn’t do it he is fully dependent can’t walk can’t talk can’t even unwrap a chocolate I lift him around a lot and the respite just gives me a chance to feel better

😬what a horrible desease this is we are on our own take all the help you can get

and find yourself 🍷

[SewBears]

Planting 380 bulbs will be rewarding. Nothing quite like getting down and dirty in the garden. It’ll be even more rewarding when they sprout or bloom depending on what you’re planting.

You’re off to a great start! I don’t know what I would do for 5 days, but I’m pretty sure one day would be spent getting a massage, a pedicure and a manicure. Followed by a fabulous dinner with wine of course.

Enjoy your well deserved respite and stay in the now.

❤️ I SewBears

[dollydott]

Oooh enjoy dear man you deserve it very much.

Love lynda xxxx

[LuisRodicioRodicio]

Hi Jeff166!

Reproducing the phrase of Anne Heady:

"Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"

Remember that the main caregiver jobs and occupations grow along with age. Without significant help it is very difficult to carry out all these activities without suffering a severe wear-down.

Rest and sleep well is essential. Combat stress, too.

From my experience and also from my group of caregivers, it is essential to find efficient help that allows areas of freedom and leisure as well as vacation periods for the caregivers, far away from the PSP problems. At least ten days of holiday each six months are essential, supposed an effective and intense help with trained personnel throughout all the year.

As say JEN2017 “nobody could/should go through this hard disease alone. Especially the caregiver”.

Someone in the community of caregivers once wrote “it is not my job to care for my loved one; it is my job to find the best care for my loved one”.

Hugs, relax and luck.

Luis

[bazooka111]

I have spent my morning coffee, my quiet time - reading all of the beautiful responses that you have been blessed to receive —- this has been lovely to read .... we are all blessed to have each other, for that I am incredibly grateful.

Jeff, I pray that you are finding the much needed rest and recharge during these days. Xo ❤️💛

[rnpacu]

I am praying for you to have some me time fo yourself. even if you don/t leave the house .Remember it is 5 o"clock somewhere.

xxo

Maria

[mjtogether]

Dear Jeff, It is just so damn hard isn't it....Hard for the loved ones and so hard for us. But you need this break desperately. The good cry has probably been held in for a long, long time. Part is fear, guilt, exhaustion, frustration and on and on.

No one can call the day, so rest up and then continue to live for the moment. All the best!!