For those who care for someone with Parkinson's disease
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| My husband of 44 yrs has PD+ and severe dementia. He is incontinent both urine and bowels. He gets sundowners at 2 in the afternoon and it lasts for about 4 hours.He's been sleeping alot more also. I have severe arthritis in my knees and some other medical conditions. I'm disabled myself. I have been caring for my husband with the help of a few people. My husband has had the PD for15 years now, He'll be 70. He is ready to go to the Lord and I'm ok with it. His quailty of life is awful. From wht I have written does anyone know what the life expectacy would be. I feel so bad for him.I know it's in Gods hands but was wondering what you all thought.Thanks..... |
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Monopoly17....that's a tough question to answer for anybody going through maybe last stages. Just a few questions first...does he have a DNR, that will help if he gets severe aspiration pneumonia, if it's already in place then no tubes, or life saving will be a good thing in his case. I've always felt that if the quality isn't there, then the DNR serves the purpose. It's so hard to put a time on PD, so many issues to think about. Everyone is different, everyone progresses different with this disease. I've realized,more so lately with going through a high blood pressure that wouldn't end, a staph infection and a few other things, that if my guy's heart wasn't as strong as it is, I could be facing your same issues. Like you stated, it is only the good Lord that knows his time and when that time is right, it will happen. |
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Yes...he does have a DNR in place....Also no artificial feeding tube. I'm finding everyone is different with this......This may sound heartless but I wish he would just pass peacefully in his sleep without more suffering. |
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monopoly I can tell you from my own personal experience right now that there is no way to predict the end. My husb has been in hospice for eight months and is in the final stage with dementia. He is bedridden, has bladder and bowel incontinence, and speaks very little. The human body is amazing. I sit and shake my head while looking at him and wondering how much more he can take. I too have wished for an event to help him move on and to end the suffering. There is no control at this point. The best you can do is to enjoy every waking and lucid moment and to make him as comfortable and pain free as possible. |
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hello caregivermary, I was wondering if you are able to be the sole care giver in your situation. I have seen a huge deterioration in my husbands condition this last year and since he had some surgery in the spring. I am trying to sell my house and move closer to where my son lives but worry that I wont get the house sold in time for him to be able to even make a move. I have no family to help me and my son is 1200 miles away. |
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I hear you all. My mom is ready to go and has been begging to die, we're ready for her to go, but our society and our medical systems won't let that happen. I would help her stop all her medications like she wants if I knew she'd be at peace, but from past experience with med refusals I know she may very well get more agitated and violent, which would help nothing. It's really intense, to say the least. I'm glad we can all talk about it here, because hard for any outsiders to understand. |
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oshroshr, I am the primary care giver. Children are not participating in giving help. I have been able to hire (through an agency) two people who help me during the day/week. Two, three, four hours at a time. I get breaks but I am totally responsible the rest of the time. Unfortunately, my husb developed a pressure sore two weeks ago and now we should turn him every two hours. This is a challenge because he is not able to tolerate the movement and using a draw sheet puts a strain on the upper part of my body. I had an opportunity to place my husb in a residential home 3-4 months ago and decided not to. I am not sure that I made the best decision. We are now on a waiting list for the home. Thank you for asking this question. I am reluctant to discuss my situation because I know it is a downer for most who are not at this level. |
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| Monopoly17, I googled that very question and according to ehow, as a result of today's modern medican a person with parkinson's can expect to live what they refer to as a normal life time. I have also read statistics that range from five to nine years from diagnosis. I tend to agree with those that believe that only our Heavenly Father knows. According to my faith I Believe the Lord will put no more on us than what each of us can bare. Seek his strength. |
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Also remember too that it's not just PD that contributes to life expectancy. If you're talking about 'normal' (as if there is any such thing) PD with the typical late life, elderly patient, there are likely other things going on as well to complicate matters and life expectancy in that case can be to the short end of the scale. On the other end of the spectrum, there is Young Onset PD, and with proper treatment people can achieve their 'normal' lifespan. My spouse is currently 13 years into his diagnosis with YOPD, as an example. Finally, I'm assuming the question posed was strictly 'life expectancy' and not 'how long can someone live with quality of life', which is another thing altogether. It seems like the original poster is really asking 'how long is my spouse expected to remain in this stage'. I think you'll get a range of answers from people who have had personal experience on that one. I think it truly IS in God's hands. |
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Well, I would say don't worry about being a downer. You need someplace to let it all out, and most people reading this thread will be people who understand. Hope you're getting support outside your family. Is there a support group in your area, or do you just use this forum for that? Sometimes it's nice to have real, live people to sit with and vent. Take care! |
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Monopoly, if you don't already have hospice involved, you might consider it. They are very helpful both with caregiving and with emotional support. They also are great at giving thoughtful answers about what takes place towards the end of life. Sue |
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| Thank you all for your comments. My Husband has had Parkinsons for 15 years. Hospice is not involved because he can still walk (barely). He has had Dementia for 2 years and can't even remember where his bedroom is somedays.He knows me and the kids (I think).I have someone come in to shower him 5 days a week. I get out to run errands 3 days aweek. Some times I go to lunch with a friend.When I'm alone it's really hard cause I have to keep repeating myself and when he does talk I can hardly understand him. He walks hunched over and sits the same way. I'm afraid he'll fall.He has been sleeping alot more. I do beleive all is in Gods hands. I was just wondering about the stages of it.Thank you all for your support. |