How do you know when to call in Hospice? - PSP Association
How do you know when to call in Hospice?
Not a hospice - but a nursing home ---- when you, or your GP realizes that you are having a breakdown!
When everything, including a cup of tea becomes a huge chore and is the last straw, when you break down crying at the slightest mistake that you would have previously turned into a joke!
When you realize that you are more hindrance than help to the patient and also, that the time you spend together you want to be quality time of your choosing and when you admit to yourself that you are no longer coping.
Good luck x
.
im very sorry about your situation i think personally that you will know yourself when the time is right mate its a horrible decision to have to make especially if you have been together for a number of years i think sanand\geoff have covered about everything in there answer to you i know it sounds very harsh but very true \\ but it might not come to this looking on the bright side shall we ]]]]]]]]] anyway take care mate look after yourselves
peterJones australia
I agree with the top 2 answers. You should not get to breaking point,it is not fair on you or the patient.When you feel like you cant go on the way you are,call someone in,before it is too late for both of you.
Dear Rosemarie,
The important thing to remember is that a hospice isn't just for the "final stage" of someone's life. Hospice care is about helping people who have a life limiting condition to live as well as they can until they die. My advice would be to contact them now. Get them involved now. Especially if the person you care for has strong feelings about where they want to be cared for and how they want the end of their life to be managed.
I guess from your question that you think you may be approaching that stage. I hope you have good hospice care in your area and that you get the help you need. Bear in mind that many hospices these days can provide care in the persons own home, if that's what they wish.
Take Care
Dear Rosemarie, I totally agree with Kathy. It was suggested to me that I contact the Hospice early on and so I asked our GP to refer my husband. Although they did not consider him ill enough to take him in for me to have respite care at that time i was amazed and very comforted that they kept in touch all along the way. They phoned every week or two to see how we were, picked up on any worries or concerns that I had and made the necessary contact with the doctor or whoever was appropriate, offered me counselling,offered Chris some massage which he thoroughly enjoyed,.they invited both of us to various groups,mostly informative for carers and gentle activities for the clients. They carried out 6 weekly reviews of Chris's health and were ready to step in at a moments notice. At the end they organised for Chris to come home to die at home and put in all the care I could ask for including a night sitter. He died very peacefully knowing his family were with him and that all possible care was being carried out. I cannot praise them enough. Do get your GP to refer straight away.
Sent with love Teena 2
I think if you're already thinking about the possibility you're probably ready. It had been suggested to me several times and I always dismissed it on the grounds that we weren't ready, not far enough down the line. But then one day I just knew it was the right thing to do and applied last November. My husband's community care worker had been gently persuasive and had advised me to plan 4-6 months ahead.As it turned out we are still waiting for a place at the home where I want him to go. It's been a very long wait and he's had two respite stays there in the meantime but knowing that one day he will be settled and well looked after there keeps us going. I hope, now that you are ready, that you won't have to wait so long.
Take care
SheilaN
I've not called in Hospice for my dear wife yet but I intend to have a meeting with the local Hospice office to find out the answer to your question and to other questions Hospice related. I'd use their advice as to when to call them in since they have dealt with many patients and maybe some PSP patients.
jimandsharynp
aka Jimbo
Jimbo, would you talk to hospice first or talk to the dr first? Also, if there are several hospice organizations in the area, how do you decide which to go with or do your own drs decide that? Sorry for being clueless here, but I am just trying to understand some of the steps in all this. I don't like the new things I am seeing in my husband, and I don't want to make snap decisions when I am overwhelmed with stress.
Thanks again for sharing your knowledge of this with us. ----Rosemarie
Rose, I'd check Hospice independant of the doctor because he may feel it's too early. I'm one who tries to be on the leading edge and would check Hospice out regardless of what the doctor indicates. However, he may have insight into how to contact the Hospice in your area or a recommendation on which on is best (although I doubt that he'd say one way or the other). I think which you go with is your decision and probably the doctor may not try to make that for you. I doubt there would be more than one or maybe two Hospice orgs in your area. Go to their offices and you'll get a better feel how good they are as you ask questions as to when they need to get involved. Hope I've helped. Glad we are sticking together in the PSP journey. We need each other.
Jimbo
Jimbo,
This is good to know. Yes, I found out there are only 2 Hospice Organizations in the area. I looked at their websites, but I think going there to get a feel for how they might match our needs makes sense. Again, I thank you so much for your insight into this. Sharing this kind of information and support is, as they say, priceless.
Forgot to add this. If you are new to Hospice you will be amazed because they have people on staff to not only handle the physical side of the disease but people to deal with the psycological (sp) side. They even have staff to help children of the patient who may not be involved totally in the caregiving. Hospice has many faces here in the USA.
Jimbo
Dear Rosemarie,
My mother was diagnosed with PSP in 2005 and two years later we were given information about hospice care. She was signed up and immediately began receiving services throughout her remaining years of having this dreadful disease.Mom recently passed this year and the hospice services she received were excellent. A nurse and doctor visited regularly and someone came in to bath her three days a week. It was helpful to receive this needed assistance.I feel it's never too soon.God Bless!
Dear RosemarieLyn and everyone who has responded to her question.
It has been recommended to me to ask my husband's GP for a referral to the local hospice, but to date I haven't, in part because Peter doesn't want anything to do with the hospice movement, however, I'm beginning to feel I need help. I have asked for a carers assessment, but have been told it will be sometime before I receive one.
Looking at your answers I feel I should bring the subject up again with Peter and suggest we could at least speak with a member of staff from the hospice.
Thank you Rosemarie for asking the question.
Peter2.
Peter2,
Does your husband view hospice as "the end" or giving up? I was sort of worried about that aspect also, but I did talk to my husband and told them that when things get to the point when I really don't know what to do for him we will need to seek assistance from hospice. I look at it as help to make him comfortable and I think he's looking at it as help for me to be able to care for him. Of course, I haven't made that step yet, so who knows but the discussion went better than expected.
Best wishes. ---Rosemarie
Thank you Everyone for all the thoughtful and sincere answers. The dr hasn't been very forthcoming as to stages or what we should prepare for next, and I am pretty much on my own here. From the things I have read, everyone seems to agree that caregivers wait too long to ask for hospice, so it was great to hear from other caregivers on what exactly that means. (My husband would fight for me to get the best care, so I want to do the same for him.)
We are going to the neuro soon. As of now we only see him every 3 or 4 months, so your answers give me plenty to ponder as I prepare for this visit.
It has been on my mind since I have read how pleased people are to receive Hospice service.
And...I do worry when I cry at the drop of hat over every little thing that maybe I am stretched a little thin. I work so hard at this, to do my best to be there for my husband, but I don't always feel confident that I've done enough, etc.
Thank you, again, to all of you dear people who truly understand all this.
Rosemarie
Hi RosemarieLyn, Yes my husband does see hospice care as the end and he can't see the point in receiving help, he doesn't as yet see it as improving the quality of his life. He also doesn't want anyone else giving care apart from myself. He and I need to have another discussion because I know I can't keep going with the current level of care I give him without a break.
Thank you to everyone who commented on this question. I don't really know the best thing to do. My husband doesn't want anyone in and would see it as the beginning of the end. To be honest I don't think I have accepted that in time I will lose him. It has been 8 years since he was diagnosed and we have managed so far. But, I have been offered help by our Community Hospital Parkinsons Support. She has suggested getting the local Hospice involved, only yesterday, but I said not yet. Your comments have helped me decide to make contact with the hospice to at least find out ways in which they can help and at least talk to them. I want to keep my husband at home but am afraid I might not be giving him the best care available. This dreadful condition makes me feel so useless.
denmob, bless your heart. After eight years you have done an amazing feat of caregiving. I know what you mean about acceptance, it's so hard to lose your husband when you shared so many dreams and thought you would have time to enjoy life together. One day he said he wakes up everyday hoping this was all a bad dream....I spent a long time in the bathroom crying where he couldn't hear me.
From what the others have said here, it makes sense to explore the hospice options. Maybe it will be for "down the road" in this disease or maybe it will be soon---anyway, I am praying things come together for all of us agonizing over this.
Prayers and good thoughts, ----Rosemarie
hi
i agree with denmob
you have done amaszinglhy well to suriv eth e last 8 yrs together
i woudl love to give you a big HUG
lol JIll
Thank you RosemarieLynn and Jillannf6 but it is my husband's determination and stubbornness that has kept us going. I keep telling him I will be angry if he leaves. It sounds silly but I believe that as soon as he gives up I will lose him. I saw it with my mum and when she gave up it seemed to speed up her decline. I also think that my husband may have a slower progressing version of the condition thank God and chivvying him along does seem to help. Sorry to gone on because I know everyone out there is facing this most dreadful of all conditions I have ever heard of and dealing with it daily. It is a pity that Neil Armstrong didn't find a cure for some of these conditions when he landed on the moon all those years ago. After all billions was spent on the project and I am not sure what we got out of it. Sorry just a but just a bit down this week.
You know I once commented here that one of the hardest things for a carer is voicing our fears and hearing ourselves say what we are dreading. But once we've said it it is instantly shared which in itself is a relief. And then comes the help. And I know how hard it is to ask for and accept help but my god we need it. We need it for both of us. So please try to find the strength to say aloud what is probably eating you up and let the experts share the burden.
I mentioned recently that we have been waiting since last year for a long term nursing bed in an ex-service personnel home. It's a wonderful place where my husband has already had respite care. Well today his admission (next week) was confirmed. I've already missed him for a long, long time and will miss him even more but knowing he'll be well taken care of in a warm, friendly and stimulating environment fills me with relief for him. Ultimately they will provide hospice care but in the meantime he will be with 'the old boys' as we affectionately call them and will love the company and the attention. A hard, heart-wrenching decision but one I am glad I made for him.
Take care
SheilaN
SheilaN,
"I've already missed him for a long, long time." No truer words were ever spoken...and we share those with you. Thank you for your wisdom in all this, and bless you as you move through this next phase with your husband and this disease. I love the idea he will be with his 'old boys' as it sounds so comfortable and welcoming.
---Rosemarie
dorothy-thompson
My husband was diagnosed with psp in 2010 but looking back the signs of something going wrong began in 2006 - sounds familiiar doesn't it? It's been a hard road to go down, knowing what to do, how to care, how to support, how to do anything as a matter of fact - has been almost impossible at times.
We have recently moved into a ground floor flat so there are no more stairs to cope with. Our new local health and social services have been magnificent in their care and support - our previous local authority offered nothing but platitudes. I feel the burden lifting and am so grateful for all the support we are receiving but ironically I think Harry is going into the "next stage" of this condition because he is exhibiting signs of what can only be described as dementia. So I am thinking of the hospice - so I would be interested to know how to proceed.
take care all
dorothy-thompson
dorothy, I am so sorry your husband has progressed to the next stage. I researched the two hospice groups in our area and have decided to visit the one that appealed to me most from the web information and recommendations from church friends. Honestly, I think this is the only way my poor husband will get any relief when he has pain because his dr is set against anything that looks "habit-forming"....no, I am not kidding. Sometimes I think the medical professionals are the biggest cause of stress for family caregivers.
Bless you as you deal with the new challenges now, dorothy.
Hi Rosemarie,
I'm in the UK and am thinking the hospices may be slightly different where you are - but in my experience try to have a look around both you have mentioned and if possible go a couple of times (easier said than done I know). Don't just look at the decor but at the people caring for our loved ones. Maybe ask the patience there (if possible) what they think. In my opinion it's never too early to build up a relationship with a hospice/nursing home etc, you never know when their help will be needed most and if they know a little about you and your loved one then that makes it all a little easier to cope with. Most of all never be afraid to ask anything - no matter how silly it may sound .... such as; can he have a cup of tea or something to eat when he likes, or how often can he shower? .... You'd be amazed what we take for granted.
Good luck in your search!
Hi Tree_Hugger,
Just saw this post, and wanted to tell you I did check out several books from the library on choosing hospice care. You're right---lots to consider. One of the books even has a check list to help. I am just trying to be prepared when the time comes. Thanks again for your thoughtful insights. Take care!
Hi Rosemarie,
Thank you for your reply - glad things are starting to come together regards choosing a hospice. It can all be a bit daunting and we can feel pressured if we don't know what we are looking for.
Best wishes to you both, I'm sure the right place will jump out at you - hope all goes well in your quest!
Take care x
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