At last, help!

Glory be! My husband was admitted into the hospice homecare program yesterday afternoon. I have been so lonely and often fearful with all the responsibility and decision-making for his care. Weeks could go by and no one else came into our home. My few hours out were always to run errands or go to my own doctors' appointments. Now at least there will be some folks checking on us with regularity. Even though I worked as an administrator of a hospice for many years, it is truly different to be on the receiving end of care.

It was interesting to see what would be paid for and what not (we are in the U.S.). My husband has received 100% of his nutrition from a feeding pump since an elective hip replacement in Nov. of 2011. Something "went wrong" following the surgery, he went in to Intensive Care on a ventilator and came out unable to swallow at all. We had never heard of PSP and no doctor suggested he might have it. There was great curiosity as to whether Parkinsons could come on so fast. It all seemed a mystery.

But you don't not feed a 250 lb. man who has been active up until this incident. So it was not an extraordinary or aggressive treatment at that time. But hospice has determined that it is "aggressive treatment" now and will not be picking up the cost. Our fingers are crossed that our regular Medicare will continue to pay for these feedings because it doesn't seem like an appropriate option to just stop these feedings. Certainly the inability to swallow IS a result of PSP.

Like Scarlett (from GWTW), I can't worry about that now.

The best news to me is that an RN will be seeing my husband regularly, a social worker will be available for our needs, an aide will come in 2 or 3 times a week to keep him clean, a pastoral counselor will come to discuss life and death issues, and a volunteer will be assigned to do "whatever" - no hands on care though. We will still need to pay for a sitter for me to get out, but oh, not to be so alone with it all.

Of course, my husband's condition hasn't changed from yesterday till today but my attitude certainly has. I just pray that I will be able to keep him home for whatever time he has left. I keep remembering the doctor's quote from New England: "A PSP patient will always outlive a 6 mos. prognosis, but will always be appropriate for a six mos. prognosis."

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10 Replies

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  • Hi Caroline,

    That certainly is good news. Hopefully the support provided will allow you to get a little time for yourself too.

    h

  • Hello Caroline . I am so glad for you , I do understand how you were feeling . it can be very stressful and upsetting having to make every little decision , you feel very much alone because there isn't very much help out there for Parkinson's and you get tired of fighting to get any help .

  • I am so glad you have now got support. You're right that sometimes we can feel so alone and isolated. Make as much use of the support as you can. It will help you share the caring role and enable you to feel more of a wife. Caring for a sick person seems to dominate and the "wifely" side seems to take a back seat. Good luck and God Bless.

  • Thank goodness you are now getting the support. I also felt very alone, even when mum went into nursing care as she needed and wanted me to make or at least voice many of her decisions which was fine but in the late middle stages when my sister finally started to show an interest she would then (sometimes inadvertently) criticise or question some of those decisions.I was having to re educate the thinking patterns of many shifts of carers and try to make mum's quality of life as good as possible whole they were happy to feed wash and change her without anything extra being considered. Meanwhile I was trying to find a balance between what mum wanted with her 'dis-executive' syndrome and what would be best in the short term. I did go and see a counsellor on the advice of my GP 2 weeks before mum passed away as the whole situation distressing me and my health was beginning to suffer from the sheer worry. But I didn't find that at all helpful. However, I did meet a hospice nurse shortly after and she spent about an hour talking to me in which time I felt a weight lifting from my heart as she put into motion the end of life care such as pain patches and liquid medication and told me what to expect from the palliative care team.She was an expert in listening and made everything seem much clearer and that I had support at last. Mum only lasted a further week after that so my advice would be to make sure you do not leave it too late to get palliative intervention and support. Unfortunately Mum's PSP progressed hugely fast and the end stage lasted about 5 weeks; her PSP could be traced as lasting 6 years in all. I would definitely agree with hindsight that mum could always outlive a PSP prediction of 6 months but could always be appropriate for a 6 month diagnosis. Which means it could be said that 6 monthly appointments to see the neurologist were completely inadequate, given that she only saw him once due to the reccurrence of infections which her appointments always coincided with.

    Don't give up, you are doing a great job and you know that when the end comes you did your very best.

    Take care,

    Dianne x

  • Caroline, I'm so happy you'll be getting some relief. What an attitude booster. I'm curious as to what was the deciding factor for Hospice, or had it been in the works for some time? In any case, it's great to get a pressure release on a regular basis.

    I, too, am a big fan of thinking about it "tomorrow -- at Tara." It allows us to live in the moment, and focus on the immediate, eh?

    God bless you, my friend.

    XO

    Carla

  • Carla, are you in the US? When I noticed a significant change in my husband (completely incontinent, declining ability to walk at all, unwillingness to engage in communication, etc.) I called his primary care physician and asked for a hospice referral. He thought I was considering hospice way too early but made the referral any how. Then an RN and a SW came out to do an assessment. We were told it was too early but they put us in what they called "pre-hospice" and called us every few weeks to see how things were going. On the last of those calls I said things had changed and we needed help badly. Hospice was given permission to do another assessment and this time we were accepted.

    I worked for this hospice myself for 18 years (retired from there in 1998) and still have many connections to current and past employees there. I can't say if this helped or not but I was extremely pleased to be taken into their program. I truly expect my husband to live longer than 6 mos. but he does meet their criteria. So that's how it all came to pass. I really can't tell you what the "deciding factor" was but I would encourage you to pursue a relationship with hospice earlier rather than later.

    I also provided this hospice with lots of good information on PSP which I got from the CurePSP organization in the US. I thought educating their Medical Director could certainly help him understand the nature of the disease and be able to better determine when admission would be appropriate.

    Hope all of this helps with what you are dealing with. Blessings to you and yours!

    Caroline

  • Thank you, dear heart. That's useful information to tuck away for a bit.

    Yes, we're in Texas. Just returned from an appointment with a neurologist at UT Southwestern. He's arranging a number of tests over the next two months, so we hope to narrow the diagnosis by the end of the year. The doctor is positive that Dale has Parkinsonism and not idiopathic Parkinson's, and he believes it probably is PSP, but because Dale doesn't have the eye symptoms, the doctor is still not sure.

    So we wait some more.

    Have a sunny and blessed day, my friend.

    Carla

  • Hi Caroline,

    So pleased for you that help has now arrived. Here in the UK the advice is, get in touch with the local hospice sooner rather than later. I did this for my husband through his GP. It was a God send. My husband benefitted from 12 weeks of visiting the day centre. From this he was able to express to someone other than myself as to what his wishes for care in the latter stages of PSP would be. I feel he is starting the early stage of the last stage of the condition and knowing everything is in place I hope when the end of life stage comes he is as comfortable and pain free as we would all want to be.

    In the meantime he is becoming more and more immobile, choking frequently and is incontinent. How awful this disease is to the sufferer and loved ones.

    It is a very lonely path we tread, thank goodness for HealthUnlocked, it keeps me sane knowing you are all out there.

    Take care one and all.

    Peter3.

  • Thank you for sharing "hospice in the UK." I love the idea of a day center. There is an independent one here where we live but it is $50/day - cheap enough but with all the other expenses we couldn't sign up for the required two days each week. Lately my husband does not want to be around others. He sleeps or "contemplates" (his term; we call it playing possum) the majority of the time. Around 3 in the p.m. he is ready for TV.

    I'm sorry things are getting worse for your husband and you. Yes, it is very lonely but, for me, a lot less so now that hospice is involved.

  • Thank you for sharing "hospice in the UK." I love the idea of a day center. There is an independent one here where we live but it is $50/day - cheap enough but with all the other expenses we couldn't sign up for the required two days each week. Lately my husband does not want to be around others. He sleeps or "contemplates" (his term; we call it playing possum) the majority of the time. Around 3 in the p.m. he is ready for TV.

    I'm sorry things are getting worse for your husband and you. Yes, it is very lonely but, for me, a lot less so now that hospice is involved.

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