Hospice experiences: Hello Just wondering... - PSP Association

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Hospice experiences

Spiralsparkle profile image
19 Replies

Hello

Just wondering what everyone experience of attending day unit at hospice are. My Mum went last week and I went with her but they prefer that patients go by themselves. Mum doesn't really want to go on her own, do you attend with your lived ones? They have also said she is only down to go for 6 weeks. Mum seemed to enjoy it but was very tired for a few days. They didn't really seem to be organised very well and hardly asked me any questions as Mum finds it hard to explain things when talking.

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Spiralsparkle profile image
Spiralsparkle
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19 Replies
jillannf6 profile image
jillannf6

they should have seen u both b4 ur mum attended usually on her own but our local hospice doesn't mind f she is settled in and ihen left

there are usually courses for carers as well

our hospice is v eel l organised and is great!

ol jill

xx

Katiebow profile image
Katiebow

We had a meeting with a senior nurse before Ben started to attend, she asked about his present condition and explained all the things on offer. There are lots of activities and treatments on offer although it has taken a while to take part in any. He is now having treatments and being helped to put together a story of his life. He won't join in the art activities or group exercise and they are fine with that. I usually go in with him, settle him down and then leave at about 10.45 and then collect him at about 3pm. He seems quite happy to go and the staff are lovely always chatting away to all of the people attending. Ben actually has his nails filed and painted with nail hardener, can't believe he has allowed that to happen. I like the fact that I feel safe leaving him as they are so attentive. Kate x

Spiralsparkle profile image
Spiralsparkle

Thanks for replies someone was meant to come out but didn't as was cancelled and we ended up going last week completely not knowing what to expect. I think will ring and ask for someone to come out and explain about it more.

NannaB profile image
NannaB

I use the time my husband is at the Hospice as time for me. It is a welcome break. I drop him off and collect him 5 hours later. I have had complementary treatments but don't now as I want to spend that time with friends. I think it is easier for staff to engage the "clients" if they are on their own and I'm sure your mum will soon become more comfortable if left alone. She is more likely to engage if she can't rely on you. If you are not there they will find ways of communicating and that's probably why they didn't say much to you. The staff always talk to me when I go and collect C. We have regular meetings as well now. He was originally booked in for 12 weeks but has now been going continually for over two years.

The first time I left C it was like leaving our first child at play group. I cried when I got outside but now I love Fridays....freedom for a few hours and he loves the music therapy, patting dog, reflexology and spiritual service (voluntary). If they make something, he chooses colours by putting thumbs up and a member of staff makes it for him to give to me.

I hope you can both relax and enjoy doing things on your own for the next few weeks.

X

Spiralsparkle profile image
Spiralsparkle in reply to NannaB

Thanks what you have written makes sense. She is just so nervous about being without me anytime let alone leaving the house. She has never been an outgoing person who would attend groups so this is another factor as it was like sitting in a circle at a residential home. An ambulance has to collect her so think will follow in car this week and make sure she is settled in as they haven't asked me anything about care needs.

I think you are right I will be the one crying on the car park!

Satt2015 profile image
Satt2015

Spiral sparkle you know my thoughts

NannaB has some good advice

Like I've said don't leave your mum til she's settled n happy else you won't be either darling!! X

Doglinton profile image
Doglinton

Chris has been going now for 18 months and I relish the free time it gives me. I take him and so I know everyone and they know me. Then I pick him up. They ask about any changes in his needs and are great. Plenty of volunteers who talk. Chris loves it.

He enjoys the attention. They make a fuss about him.

I think its important to leave them to settle. Remember the staff are used to caring for seriously ill people They even knew about PSP. Also they offer counselling. ASK !!

It will be good for your mother and, yes , Chris gets very tired too.

Enjoy your off-duty opportunity.

love, Jean xx

Spiralsparkle profile image
Spiralsparkle in reply to Doglinton

They did say they had had experience with PSP but never CBD so we're going to read up on it. Will see how she feels when she comes back this week. Thanks for reply.

Kevin_1 profile image
Kevin_1

Liz attends the Hospice once a month for a session with a physio. We were told the idea is that she becomes familiar an comfortable with the place and the staff. They have counselling for carers as well as an number of other carer training and well being type events.

Everyone is terribly nice and on the ball without being patronising / sickly (I don't have a word for what I want here sorry.

Like other posters have said. They sat us both down did a thoroughgoing assessment of Liz's needs, wants and beliefs and they made it clear that when her last days come they will have that all on file so they can 'get it right'. Seems terribly early for that!

Additionally in the past they have spotted issues and with Liz's permission they have contacted other services and got things moving for us.

Spiralsparkle profile image
Spiralsparkle in reply to Kevin_1

Thanks for your reply. I really do hope that Mum becomes comfortable there as it will be a valuable support I hope.

GilliW profile image
GilliW in reply to Kevin_1

Hi kevin I am new to the forum. I am impressed with your knowledge and the help that you are giving your wife. Try and get the last wishes organised. It may seem early but a bad fall and consequent pneumonia may happen sooner than you think. I don't want to scare you but be prepared. When the subject of final wishes were brought up with us I was upset but I'm glad we had discussed what we needed to do for Dale, when the time came. He died 5 months ago. So still a little raw but I am chatting to people who are carers like us and hopefully giving support . Keep in there...my main advice. Just love them and have time for yourself

Kevin_1 profile image
Kevin_1 in reply to GilliW

What a wonderful post and good advice.

No, I struggle too at times and have tearful spells as I try to manage and keep going on bad days.

I will definitely have those conversations with Liz.

Sorry about your loss. Thank you for taking the time to write despite it.

Warmly

Thank you.

vlh4444 profile image
vlh4444

D has been going to the Hospice for about 18 months. He loves it, even now that he can't communicate very effectively. The staff and volunteers all know him well and can even make him laugh sometimes. Our experience is much the same as Nanna B, Jean and Kevin. Of all the people and organisations we have had contact with since first diagnosis the Hospice has been the most supportive and helpful both to D and to myself. Do try to persevere, I'm sure your Mum will enjoy it when she has settled in.

Vicki

Spiralsparkle profile image
Spiralsparkle in reply to vlh4444

Thanks Vicki. I'm hoping that she does enjoy going and they allow her to go for more than 6 weeks. I have explained to her that making contacts now will be beneficial in the long term and further down her path of illness. I'm keeping all crossed anyway it all works out.

Tokki profile image
Tokki

Bugs has been attending our local hospice for about4 months. I took her the first time and stayed for about 40 minutes or so to speak with the staff. I then collected her mid afternoon. Since then she has been going with the volunteer drivers. She is not very positive about it but that is no different from everything else. There are activities if she wants to join in. She now does the exercise class, has her hair done and reflexology.

I encourage her to go as she is slowly making friends and it gives me 5 hours when I don't have to be listening for a fall.

As others have said, stick with it. It is a big step especially in view of the traditonal view of the purpose of hospices but they are now much more into palliative care on a long term basis. Yours might also offer carers sessions and advice.

Spiralsparkle profile image
Spiralsparkle in reply to Tokki

Mum can be stubborn so if something she doesn't like happens that will be the end of her going. I think she can see what the benefits are but has never been an extrovert or finds it easy to talk to people she doesn't know normally. Everyone seems to have had positive experiences so I hope over next few weeks she will be more comfortable in herself to attend.

It would be a welcome little break to relax myself indeed.

Tippyleaf profile image
Tippyleaf

My hubby has been going to our local Hospice for nearly a year now two days per week, took a while to settle but he loves it now. It gives me free time and we have something to talk about as this is his world just like work used to be. I find staff a great resource and so many lovely volunteers. he does art and music therapy and we have attended a few Hospice social events. I would embrace all that is on offer and see how it goes, I do acknowledge it is not for everyone.

Spiralsparkle profile image
Spiralsparkle

To let you all know Mum came back smiling a bit ago. I went in with her for about an hour and then left.

They had a tea party for the Queen, she had two hand massages and the art therapist made a plant pot for me from Mum.

She can't remember all that happened as she does get confused when not one on one but to she her smiling and talking about walk around garden has made my heart burst.

Fingers crossed this will work out for her.

Thanks for all your replies. Much appreciated. I was a nervous wreck myself all day as she hardly slept last night with her anxiety

Xx

Satt2015 profile image
Satt2015 in reply to Spiralsparkle

Wonderful news!!

Massive Progessive for you and your mum!!!!!!

I'm. Hoping you will both sleep well tonight. X

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