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Topic Is it time for hospice? Go to previous topic Go to next topic Go to higher level

By housemouse On 2012.02.19 21:02
My beloved is no longer eating enough, and says he just isn't hungry. I have to beg, cajole, threaten, etc. to get him to drink fluids.

I offer to make his favorites, but he doesn't want to eat.

He is severely constipated, but balks at drinking the Miralax in an 8 ounce glass of water - says he just can't do it, gags him, etc.

He has lost 20 lbs in the past 6 weeks.

He has always been fastidious, showering every day, and no longer wants to shower or change his clothes. He still wants to shave, but can't manage that on his own.

Getting up from his lift chair is becoming very difficult. I tried many times today, to get him to the bathroom to have a BM, but he feels to weak and shaky.

Is it time for hospice?

By lurkingforacure On 2012.02.20 08:55
I am so sorry, this sounds just like my mom, who did not have PD but did have what hospice told me was "terminal decline". She became depressed after leaving her job (which she hated anyway, I don't understand that!), started losing weight, hard to entice her to eat, fell, lost more weight, it was awful. All I could do was be there and love her, it was a very scary and sad time. I felt completely helpless and never want my children to have to go through that or feel as I did.

I was told that to try to keep my mom around (she became septic and was rushed to the ER in shock) would hurt her even though she was not conscious and prolong the inevitable. The ER doc was quite blunt about what was going on, which I needed to hear, but it still horrible.

There is lots here about hospice and I think I would look into it, it doesn't mean someone is going to die, just that you are at that point that you need their help.

By susger8 On 2012.02.20 13:57
When my mother was ill and not eating, they prescribed something called Megace to improve her appetite. It seemed to work. You might check with his doctor about that. On the other hand it might be part of a general decline.

Our experience with hospice was very positive. My only regret was not getting them involved earlier.

Sue

By housemouse On 2012.02.20 20:29
I am getting support from the nursing supervisor and the head nurse here in our building.

The Hospice social worker came to day, and their "intake" nurse will come tomorrow.

The social worker suggested that I not force him to eat unless he is hungry, and then ask him what he REALLY wants to eat.

I managed to get him to eat some old-fashioned oatmeal with Vermont brown sugar this morning, but nothing since.

He isn't thirsty and doesn't want to drink.

I think he is preparing to leave, but hope that Hospice will help give him comfort, and that they will be able to prolong the life that is left.

The rest is up to God.

By Michele On 2012.02.22 13:05
I give you my heart and concern. My sweet husband is in hospice care at home. Know that the hospice staff are the most caring and understanding professionals you could have. They will help your husband and you with what is happening, whatever it is. They provide support that you can't get elsewhere.

By parkinit On 2012.02.25 14:28
Housemouse -

So sorry to hear of this. Just continue to love him and be there for him. I think this disease should be fought, but when the fighter is ready to throw in the towel, we need to be supportive of that wish as well. That is always easier said and done. I don't know if I'll be able to take my own advice when "our time" comes.

I agree that hospice is wonderful and better to bring them in sooner than later. Sounds like you are doing everything right to me, girlfriend.

Hugs to you -

By housemouse On 2012.02.25 19:59
He can no longer move much of anything, now has a hospital bed and a sling to move him.

His suffering - excruciating neck pain and burning face - he is getting morphine, but it seems to work sometimes and not others.

I feel inadequate, confused, and exhausted. The grown-up part of me wants to be here for him 24/7. The childish part of me just wants to run away, because I can't do anything to relieve his suffering.

Has anyone here ever gone through this? Can anyone help me figure out how to help him find peace? I think he is fighting it.

By karolinakitty On 2012.02.25 21:30
housemouse...here is a link to a previous post in there is one from ILoveWil...she was here but a short time but her words forever ring in my head...perhaps it might help you....

http://myparkinsons.org/cgi-bin/forum/topic_show.pl?id=3179#19148

By housemouse On 2012.03.03 09:39
Thank you all for your support. My beloved husband "graduated" early this morning, with me at his side, in our own apartment.

He had no pain, was comfortable to the end, and Hospice was a true blessing to us.

We decided we wanted to do something to help others suffering from Parkinson's. His body is going to help educate medical students and research at the University of Minnesota, and Harvard is doing a research project on Parkinson's, and has asked for his brain.

His body will be treated with proper respect, and his ashes will be returned to us for a proper Catholic burial.

Finally, his suffering is over.

By karolinakitty On 2012.03.03 10:07
So sorry about your loss Housemouse. May you have peace in your heart knowing you did everything you could and he is now in a better place.

By plcpainter On 2012.03.03 11:01
Dear Housemouse -- how I wish I could give you a huge hug and sit with you today. I am so sorry for your loss but also happy that your beloved husband has "graduated". That term warmed my heart because it says you know he is now at peace and full of joy. Please keep posting and let us know how you are doing. Through your love you he was able to go on. Peace by with you.

By susger8 On 2012.03.03 11:19
I'm so sorry to hear that your husband has passed on, but glad that it was easeful. I wish you peace.

Sue

By LOHENGR1N On 2012.03.03 11:37
Housemouse, My condolences to you and yours upon your loss. May G-d comfort you in this time of grieving. Take time to heal, laugh when you can and cry when you must, know you are in our thoughts. And on behalf of the Parkinson's Community I thank you and your husband for thinking also about us throughout the battle with this disease. Your selfless donation to research and education of those helping to fight this disease is what heroics are about. Your actions will help countless souls who are entering or will enter the battle with Parkinson's Disease. I bow deeply with respect to You and Yours for Your courage and compassion in the decisions and actions You've taken. Sincerely Al

By Reflection On 2012.03.04 10:53
Dear housemouse - I am glad you were together, and at home - it's how most of us would like to graduate, and bless you for it.
Bless you also for your generosity in furthering medical research and education. Your decision may help many others, and especially help further research into Parkinson's.
Yesterday, I was at a friend whose daughter is a first year medical student. She said that they are told that the bodies that they learn from are not gifts to them - but gifts to their future patients.Thank you for that gift.

By moonswife On 2012.03.04 21:07
Housemouse,
I add my condolences. You have communicated with this community with such dignity and compassion. You made the identical choice my family will. I am going to encourage my husband to go the same route and donate his body. With the grace of God that is years away for us.
Stay with the group, please. You have much to add.
Moonswife

By parkinit On 2012.03.07 22:07
Housemouse -
Hugs to you. We know it is a bough time. Know that we care for you and truly would give you a hug if we could.

What a brave decision for you and your husband to donate to research.

THANK YOU.

My earnest sympathy to you in this trying time.

By housemouse On 2012.03.08 17:51
Today has been a hard one. I miss him so.

Love your ones with Parkinson's. Even when the symptoms are frustrating.

As I said, I miss my beloved so much, even as I am relieved that he is no longer suffering.

I have no clue what to do with the rest of my life. We were a whole, now I am just a lonely half.


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