Hi, I know I keep stressing how helpful the local hospice can be to us. I want to tell you all about today!
I have had the OT, from St Peter's come to see us today. A lovely woman, knew her stuff. Treated S with total respect, made us both feel as if she really cared, that S wasn't a burden on society, just someone who needs a bit of help to make life easier for him.
You will never guess this bit, I was shocked, she actually watched him, getting in and out of bed, getting into the bathroom and to the shower! Took him out to the car! Then was able to offer some advise and put several things on order for us, that will help. Because S felt part of this, I think he will accept the tools given! This is sooooo different from the ones from Social services, who only sit and talk to me for as little time as they can get away with!!! Until this morning, I would have said, the OT's were one of the better services that I have come across!!!
Also, the hospice have been great dealing with some of the other people I come up against. I don't know what sort of gun powder they use, but certainly, fireworks have been placed in appropriate places and action follows very quickly. Yesterday, at a carers course I am on, at the hospice, I was moaning about how useless I thoughts pads were, because S's convene is still in the post! Within a couple of hours, the local continence nurse was on the phone, seeing how we were, was there anything she could do!!!! Coincidence, or what?????
So anybody out there, who has NOT yet been in contact with your local hospice. Phone your doctor first thing in the morning, get them to refer your loved one NOW!!!!
Lots of love
Heady
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Heady
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My neighbour works at the local hospice and has often suggested I get in touch . She told me that I could even go In and stay with him if I so wish . .
Hi Cabbagecottage, I am not talking about respite care, I haven't got that far. It's the day to day stuff that we ALL need some support, that they are helping with. The little things that grinds us into the dirt and our wonderful SS, then step over, ignoring us. Those things, they are brilliant with! Please, please, talk to your neighbour, get their help. I promise, you won't regret it!
My husband has been going to our local Ellenor hospice once a week, maybe for going on a year now. I think it was our GP who referred him.They pick him up and drop him back off and all the staff are so wonderful and supportive, always asking if I am ok and coping etc and that they are there if I need them.
I have been on a carers course there and had a course of complimentary treatments too.
That one day a week is brilliant...my day off....... And I know that the hospice team will be there with us till the end!
I would recommend anyone to ask their GP for a referral if possible.
We have a community nurse that visits or telephones regularly. I have just had a decent OT around to check if we are doing things correctly and if we need any extra help. Several rockets have been placed into social services, district nurses, contenence nurses. Every time I moan (to some one from the Hospice,) about lack of help from one of them, within hours they are on the phone, seeing what they can do. Yesterday, I complained that nobody had been near us, regarding access to our property. We were referred, back in May. I telephoned SS, two weeks ago, saying I had just experienced real difficulty getting S into the house, due to our steps. Nothing! This morning, funnily enough, I got a call, asking if they could come on Monday!!!
Also, you are dealing with people who understand, probably have heard about PSP and actually dealt with it! They know how to talk to you about difficult matters, who recognise that you are frightened, lonely, TIRED, fed up and devastated about your loved one suffering with this evil disease. I don't about you, but I have not met one person in the NHS, that has been able to any of the above!!! All the doctors are interested in,(apart from picking up their huge salary!) is curing people. That's great, but we know they can't fix our guys, so we are made to feel, unworthy of their precious time! Where as the Hospice are trying to make the last few years as good as is humanly possible, for all concerned!!! That includes you! We are treated like a team, both are suffering from this evil disease, I am just as important in the care plan, as my husband! I am treated like a grown up, who actually can have an important input, to S's care!
We have had our recent weekly visit fro th mental health nurse that has been assigned to us since I started the ball rolling with th CHC ,
i told them in rpthe first place . make him better and I won't be bothering anyone for help ...
I wish we had had them before m they are trying Memantine for his thought process and it has helped a bit . Now. Going to up the dose to se if it lo improve any further .
Have just managed to persuade Ben that the hospice can offer us help and support. Had to be very cunning to do so but am so pleased I did it and that we are on the radar now. They have done a home visit at which Ben wasn't too forthcoming but they have started the ball rolling and OT visited last Monday and managed yo persuade Ben to try a few aids. I am having 10 counselling sessions with them as the doctor thought that I needed something to help with the stress of not being able discuss things with Ben because of his denial along with all of our family being hundred of miles away. First one today so better take the hankies.
Well done Katie! Ask if they run a Carers Group course. I have been going to one. They are brilliant, you can talk to people who really understand, funnily enough, hardly any tissues have been used. All too busy laughing!!!
Katiebow, I am with you on the denial thing with my spouse. I have not found anyone (doctor) to talk to yet. My spouse is on hospice; however, we were told that if he gets hospice, he can not have OT,PT, and ST.
For him to get all of those it will cost us $480 a month. We are trying to go through the VA for approval of them to pay 100%. It is taking a month or more for the VA to give us an answer of approval or not. The doctor ordered hospice for the time being.
I was up set with BC/BS because the VA and Medicare pay 100% of therapies. BC/BS only pays 80 to 90%. Leaving the patient to pay rest. We have paid BC/BS high premiums for 28 years through my spouse's work. They should pick up the cost for this.
Regarding the hospice care ruling out therapy: The VA has my guy under "palliative care" for what they categorize as a catastrophic condition. He gets PT, OT and ST at home right now, although we are going to try the LSVT Big program again through his Medicare insurance, which means no home visits for a bit. We have to go back and forth - one thing at a time. There is a 15 dollar copay for each therapy visit through the VA, 20 through the Medicare, at least until he hits his deductible..
Yes, we are in the US, in Maine. I don't know why things are easier to access for us, unless it is that our state is so scarcely populated. Once we got approved, things have been wonderful. It did take some months of managing to meet for an appeal, but once the OT met us, we were okayed for the stair lift I've been hoping for, and tomorrow the company is coming to measure the stairs. The VA has been great.
Hi definitely agree about support from local hospices, but we have had to move from our local hospice day unit as they could not look after M due to PEG and hoist as they were a volunteer based. I was pointed at a nurse led hospice about 20 miles away. I had to get GP to refer us to them, they were concerned as we were out of their catchment area but once they saw and assessed M they have been great. They also can arrange transport if I have a hospital appointment. They have offered respite once every 4 months which I hope to start in Nov.
Seems that the USA have a very different system to the UK, all I can say is thak goodness for the hospice movement here in the UK, they seem to be the only real listening ear as more geared to palliative care and will help getting through the hoops that I am likely to have to jump through. Xxx ps needed the hankies after today's country felling session.
Hi there, only had the first session but was good to feel free to open up about my hopes and fears. Able to say things that I wouldn't share with others people. Fingers crossed it will help me to prepare and cope with what is ahead.
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