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Topic im so scared Go to previous topic Go to next topic Go to higher level

By jules On 2011.11.27 23:38
Hi everyone, I'm so scared for my dad. His Parkinson's has become so much worse. He fell and broke his hip. Rehab just sucked for him. He hated it. I tried to spend time with him, letting him know he wasn't abandoned but he declined so far and so fast. He has quit. He has always suffered from depression. He just can't bounce back this time. He has spent almost a month in the hospital and rehab. We went on a cruise in September and he was very independent. He could take his own meds, warm his meals, walk with the walker. He was always a pleasures to be around. We even booked a cruise for February.... then the fall.

He is not responding to his meds. He won't help if trying to stand. He has become incontinent. Won't eat because food at the nursing home is "crap", but won't eat his favorites when I bring them in. His speech has also been affected. Its very hard to understand him in person let alone on the phone. He has little or no interest in anything.

He has asked for hospice. He said he wants to go and is tired.

After a few days and a lengthy decussion with my boyfriend. We have decided to bring him home with us. I hope this is going to workout. I want him to be comfortable but Im scared I'm not strong enough.

By LOHENGR1N On 2011.11.27 23:56
jules, Although it can and does happen, such drastic change generally points to something else being wrong, as by description Parkinson's Disease has somewhat slow progression. Infection? Hospitals and Nursing Homes are notorious for NOT keeping to schedules on our med's. Example if the Doctor prescribes a medication say Carba- L Dopa 4 times a day saying to take it 4 hours apart. The Hospital will read it 4 times a day and give it 6 hours apart unless the Doctor writes on the order to be given 4 hours apart! This in of itself can cause Us all kinds of problems. Also check any medication for depression for side effects or interactions with His medicine (We have to do this) as many times the Doctors aren't on the same page or are so busy they don't consider this. If His med's are off kilter from the prolonged stay and there is any interaction with other med's it could explain why He's having such a tough time "bouncing back" this time. Keep Us posted. Take care, best of luck and hang in there.

By susger8 On 2011.11.28 08:51
Hi, my dad also broke his hip in a fall. It was a considerable setback for him. Many people here have observed that general anesthesia seems to have a lasting negative effect on an older person's thought processes and memory, and I certainly found that to be the case for my father. Being away from home was very disorienting for him. His mood and his cognition improved after he came back home. He did eventually recover fully from the break (physically I mean) -- it took about a year.

My dad was released from rehab after 5 weeks and I feel it was too soon. He couldn't get up even with help and had to be lifted. Fortunately we had a strong aide and a lift chair. You should be aware that he will need a LOT of assistance and a lot of heavy lifting. (I recommend getting a lift chair if he doesn't have one.)

Falls are part of the disease and they are not 100% preventable despite our best efforts. Was he living independently before the fall?

I hope that your father's mood improves once he is out of the rehab center. Lohengr1n has some good points -- medication being off schedule could be affecting him. Not to mention the less than comfortable ambience of a nursing home!

Be sure to ask for advice here, the members are very knowledgeable and very helpful.

Sue

By Michele On 2011.11.28 19:07
Hi Jules, my husband has advanced PD and my father also had PD. My father had a similar situation to yours. He lost a leg to pvd and was in hospital and rehab for about two months. He was 75 and had hallucinations and delusions from the anesthesia and unfamiliar surroundings. After he got home he gradually became his old self. Medication problems in hospital and rehab are common as stated above and could be a factor with your Dad. Taking care of your father at home may be a full time job. Be sure to get all the assistance you can with home care, nursing, physical therapy and psychologist if needed. Keep us posted on how you are doing.

By jules On 2011.11.28 21:10
Thank you for the kind thoughts and advice. My dad has been through a lot this year. My mother died from cancer last December. He had to move from his home with all his friends to mine in another state. In the past month he has lost his uncle and his closest life long friend. The neurologists feel he has PSP because of how fast his Parkinson's progressed.
I'm praying its just the medication and once he gets home things will change. He looks so tired. I just want to do the right by him. I'm trying to support his decision to call in hospice, but I don't want him to quit.

By chroop67 On 2011.11.28 21:36
Think long and hard about bringing him into your home. He will require round the clock care and you don't want to have any reason to feel negative towards him. He is already in care. We all want our parents here for as long as possible but if he is unhappy and resigned himself to the fact that he is ready to 'leave' we must respect this. Parkinsons does not leave much room for living once it takes a turn for the worse. My mom has declined rapidly in the last few weeks and frankly has little quality of life. As much as I love her and would miss her, I think that a long life in her current state and beyond is a horrible thought. We can love and care and look after without giving up our life. I would NOT want my children to sacrifice their dreams/future to care for me.

By LOHENGR1N On 2011.11.29 00:15
chroop67, Where would any of Us be if our parents thought like this when they were expecting Us? I understand you may be enduring a tough time right now but really? This disease carries Us to dark places at times but in my estimation one of our great human qualities is what we do to get through and rise above these dark places. As posted if a rapid decline there is usually some other cause at work, infection, medication or side effects and inter-actions even with over the counter drugs or some vitamins and supplements (even some foods interfere with medicine uptake). And as We were reminded anesthesia (not only surgery but dental too). I hope You can find out if any of these pertain to Your Mothers current problems and get it sorted out. Take care, best of luck and hang in there.

By chroop67 On 2011.11.29 11:02
Lohengrin,
Thank-you for your response but I must disagree with you. First of all expecting a child and dealing with a chronic illness are two completely different situations. I really don't understand the relation you are trying to make.
As far as my mom, we have had her checked for infections and nothing has changed in her meds, this is a chronic illness and there will be decline.
Yes there are dark places but they are much darker for her than they are for me. Nothing brings her joy anymore. Her delusions control her and she had lost her ability to rationalize.
Before her disease progressed she made us promise that we would NOT compromise our dreams and future because of her, that would devastate her. I expect the same of my children. I visit her often and I have seen so many spouses at the home who come 3x a day. My husband and I both agree that if one or the other ended up in a similar situation we would expect the other to continue living and not allow illness to steal two lives. Visit, yes but not to the point where it consumes their life.
My mom is so much more than this disease that now defines her but I refuse to allow it to define me, a trap that too many caregivers fall in to.

By LOHENGR1N On 2011.11.29 16:27
chroop67, You asked or stated, "Thank-you for your response but I must disagree with you. First of all expecting a child and dealing with a chronic illness is two completely different situations. I really don't understand the relation you are trying to make." The point is We never know what may come of anything, a child can be born with a chronic illness it is a gamble and to assume otherwise, nothing is guaranteed. A child consumes our (parents) lives as You consumed Your parents lives at the start. But to say well I'm not letting them or their disease consume MY life is in my estimation very lacking. The sacrifices We as parents make for our children We do without thinking about how it is interfering with what We want to do. If that is what Your Mother wanted and you promised to do then that is between You and Your Mom. But to advise others to think long and hard before doing for a loved one based upon the prior agreement of Yours isn't right in my opinion. As I read these postings from time to time I find I wouldn't want my children to be burdened caring for me if I got sick. I really do wonder if those statements will or would change when that sickness comes? But again that's between those involved. Not a basis for advice to others who haven't had those conversations or are not of the same incline as those who have. I do also disagree that Your Mom is defined by Parkinson's Disease, that is your personal call, I do respect your right to voice that call if that is how you see it. As for a caregiving trap? Life goes on after Parkinson's for those without the disease, a pitfall along the way, an unwanted detour, yes certainly! Many see Caregiving as an opportunity or privilege, some a duty and others unpleasant and bothersome. I think I'll end this here as I'm not trying to debate or engage in the subject of caregiving. You asked the relation I was trying to make between having a child and dealing with a chronic illness? That point as I alluded to above is, although one is the beginning of life, the other end of life, both require sacrifices made and delays of future plans for the good and well being of those involved, first and foremost those who through no fault of their own have to rely upon others so they may live. As I said I'll end here we can agree or disagree. Take care, best of luck and hang in there.

I do look forward to reading Your posts we're all in this together and We all have points to contribute.

By parkinit On 2011.11.30 00:20
jules -

Back to YOU, dear friend.

Being in a hospital or environment that is unfamiliar can be very disruptive for one with Parkinson's. PWP LIKE ROUTINE! They need routine and a familiar environment. That joined with the anesthesia could be causing his depression, etc.

With that being said, it is difficult to convince someone to stay on this earth when their mind is set on the eternal. Perhaps that is where your dad is at, but it seems suspicious that his "progression" would happen after a fall and while in the hospital when he was so different just a few months back. I would continue to pursue and lobby on behalf of your dad while he is unable. He needs to be surrounded by love and those who care for him to encourage him to want to live.

By jules On 2011.11.30 13:05
Dear friend parkinit and everyone, thank you thank you thank you. While I do see both sides of this debate, I feel I have to try. I was blessed with both loving and supportive parents. I want to give him the respect he deserves. If that means I put my life on "hold", then hold I will. I'm in a loving a stable relationship which I know will survive.
Dad comes home tomorrow. I'm praying! Thank you again to all of you who have me in your thoughts.


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