Helping Those Who Care for Parkinson's Patients
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Much decline at our house. My husband, who has dementia as well, has been going downhill at a rather rapid rate the past couple of weeks. Hospice has come in and taken over. But every day he gets worse and worse, new worse symptoms...in the span of a week we have gone from not walking well, to not walking at all and being wheelchair bound, to intractable pain, to yesterday's new condition, aphasia - not being able to speak in anything but gibberish and not understanding well what we are saying to him. But it's the pain I write about...it comes at night for the most part, in his lower abdomen he indicates, and he spends all night screaming in pain. The hospice doctors have chalked it up to muscle pain or spasms - dystonia perhaps? - because they can find nothing else "wrong" with that particular area of him. We are having to administer powerful painkillers at night and throughout the night just to get him to be able to sleep - and not only do we not want him to be in pain of course, but also if he is awake screaming, the kids and I aren't sleeping either. But has anyone ever heard of or experienced this, intractable pain at night like that? Seems to be much better during the day. We still don't know how much longer he will have, the way he is going downhill at this rapid rate, but I am glad we have the hospice care...seems we arranged that just in the nick of time. |
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Busymom, I'm so sorry to hear about this, I don't know what you do about pain in that area. Maybe it's related to when he eats at night? Or what he eats at night? If it's dystonia, maybe the doctor can try botox. It worked wonders for my husband's foot, which he was turning in and under, and falling all over the place. Within a few days of the botox, his foot straightened out, it was probably the most effective treatment we've had in all our years of PD. I am curious, and others probably are too, to know how many years your husband has had PD and what the hospice doctors looked at in deciding whether it was time for hospice to come in? If you don't mind sharing, of course. We're all on the same journey and facing the same difficult issues. |
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| It might be worth reaching out to a Palliative care team. Their purpose is to relieve pain and distress in a chronic illness. While they maybe part of a hospice organization, their services are not linked to a prediction of 6-months-to-live, but rather to maintaing the patient's and the caregiver's peace of mind and comfort in a protracted illness. |
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Unfortunately I find myself writing this post, sitting in a bedside chair in a good hospice/palliative care facility. They do not think my husband has much longer...between today, and maybe 4 more days at most. He just went downhill so quickly and suddenly.... But he does have Lewy Body Dementia, not just idiopathic Parkinson's. He is only 60. He has had this disease for 10 years, since he was 50. Too soon. Too early. Horribly sad. For the past couple of months he has had no direction in the house, couldn't find the bathroom, kitchen, bed, etc, without help, and for the past few weeks, has assumed a stooped posture at all times, wouldn't/couldn't stand/sit up straight, always hunched over. Then suddenly one day recently he started falling and had to be put in a wheelchair, then the next day he couldn't support himself at all, then started suffering extreme abdominal pain at night, then two days later lost his language abilities (couldn't find any of the right words), then the next day slept pretty much all day, wouldn't open his eyes, but would still swallow liquids through a straw and meds, then the next day...yesterday...wouldn't wake up at all. I managed to get him to swallow one Sinemet ER with a swallow of orange soda, but that was the last thing he would/could swallow. He was under hospice/palliative care at home already, so the hospice nurse came out and said he was "transitioning", his body preparing to die. Since we have kids at home, they took him to their facility they also have, to care for him and allow him to die here. We felt he would get better final care here, plus we didn't want the 8 year old to...walk in and find the worst in the middle of the night on a bathroom break or something. We don't feel he knows where he is anyway, so it's ok...we are by his side (kids during the day, me round the clock) and that's what's most important. His inability to navigate the house led me to try a couple of weeks ago to apply for hospice care, to get more help at home, volunteers to help during the day or whatever, and I wasn't even sure they would accept him, but due to his recent stooped posture, inability to navigate, a recent blood test showing high levels of creatine kinase which signals the breakdown of muscle, and just clear need of help, they put him down as end-stage Parkinson's and agreed to take over his care. I was kind of surprised at the time but it turns out I wasn't a moment too soon with my call unfortunately. I would say it never hurts to ask. Find a good facility that provides what you are looking for and ask them to do an assessment. If they determine care isn't needed yet, they will tell you what changes would need to occur before they would accept the PWP as a patient. They really swooped in immediately after we signed those forms...that very night, medicine and equipment just showed up at our door like magic. I am very glad to have made that call to them. On the other hand....I am so sad/mad/grief stricken/angry at having had to make any such call at all....this miserable disease!! WHY???? Why did he have to be stricken with it?? Why has he - and our whole family - had to suffer with it for the past 10 years??? Why is his life over at 60?? Why will I never grow old with him (I'm only 47) and why will our 15 year old and 8 year old lose their father???!!! I can't help but think of the scene in Steel Magnolias where at Shelby's funeral, Sally Field screams, "WHY???? I wanna know why!!! I'm so mad I don't know what to do!! I can jog all the way to Texas and back but my daughter [for me, husband] can't! Why?!?!" No matter that I knew he had this disease, and no matter that I've known this day was coming...although two weeks ago I had no idea it would come this suddenly and quickly!...you just are never really prepared...and the poor kids...the poor kids...their dad....life will never be the same for our family again. |
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Busymom, My heart is with you. This is such a hard transition. And for him to be so young. Allow yourself to be with him, really with him, for this transition and then to be with yourself and your children as you begin to heal and discover your future. VV |
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| I am just so very sorry. What a lot to process and handle in such a short time. I am so glad that you have hospice to help guide you through it. None of us really knows what to expect and the hospice teams have seen it all. I hope they are not only a help but also a comfort to you and your children. |
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| Busymom, I am so sorry you are having to go through this. May you all find peace. No one can fully understand your pain and loss, but we all care for you and your children. May your family heal with time and try to rest when you can. Hugs to all of you. Jane |