For those who care for someone with Parkinson's disease
[Home] [Forum] [Help] [Search] [Register] [Login] [Donate]
You are not logged in


Topic another one reaching THE decision Go to previous topic Go to next topic Go to higher level

By Rempt2 On 2014.04.29 16:56
It seems several of us spouses are reaching a decision lately about putting our husband (usually husbands) into a facility or hospice. My husband, Michael, has unfortunately also reach that point. He is on a vent and can't breathe totally on his own. The infection he developed left him with damaged lungs. The options are to have a trach and try to find a facility nearby that will take him (I have found there are very few facilities taking vent patients) or hospice and make him more comfortable but he may not live as long without a mechanical breathing machine. I am struggling with the decision. While he can't talk he is alert and knows I'm there. I won't place him out of state where he'll be alone. The drs feel since he is totally incapacitated would he want this but quality of life to one person is different to another especially at the end. A decision will have to be made soon as he can't stay in ICU much longer.

By jaxrock On 2014.04.29 18:17
Oh my goodness....what a difficult time for you.
I hope you find peace and comfort in whatever decision you make.

By parkinit On 2014.04.29 18:34
I'm so sorry for you and the decisions you will face. Did you talk about this ahead of time with your spouse on the vent and if he would want to be kept alive if the quality of life had significantly deteriorated?

My spouse and I have had these difficult discussions. I know he doesn't want a vent, doesn't want a feeding tube or fluids if he can no longer partake. He feels that all it is doing is prolonging the natural process of his body trying to shut down. That is why we are now in hospice. Many (I think most??) hospices also do not encourage feeding tubes, vents or additional fluids.

That said, no one knows your spouse better than you, so I know you will make the right decisions for him. Hugs to you.

By Rempt2 On 2014.04.29 20:06
We did sign papers that were part of our wills packet but they are extremely general and more like a form. We should have taken as much care with this as we did our wills. If we had known more about what ICUs are like we probably would have been more specific. Sometimes people have to be on vents to stabilize them. That was the decision made in the ER. I talked to hospice this PM and they do take people on breathing apparatus called B or C pack. They are meeting tomorrow to further evaluate him. Hopefully they will accept him and he can come home. Thank you for your prayers and thoughts.

By carman96 On 2014.04.29 21:28
So sorry. It's a difficult decision to have to make. I'm sure you will know what to do that is the best for him.

By Grammy7 On 2014.04.29 23:29
Rempt2 I am so sorry you have to make this choice. I am praying for you. The thing that helped me when I had to place my husband in a home was that I really did want to do what was best for HIM. It was and is hard for me but I truly know he is where he needs to be.

By laylee7 On 2014.04.30 11:40
So difficult, your love will make the right decision and he will know that. Hugs....and prayers for strength.

By jcoff012 On 2014.04.30 18:06
Rempt2, you may already know this from other posts, but when our oldest daughter was fifteen (31 years ago in September), she was hit by a car and then put on life support and declared brain dead. It was a difficult decision to turn off the machine, expeciallly because we did not ask her to be put ON it. But, for some reason, we had discussed this scenario before she died and we knew she didn't want to be kept alive in that state.

What no one will honestly tell you is how YOU will grieve and even have doubts about the machine sustaining life. Only someone who has faced this can speak to the personal agony you are facing. This is decision is plagued with doubts and hard choices, but trust in your doctors and in yourself. No one but you can possibly know what your husband would want.

That said, we have no regrets. We spoke to several doctors, her pediatrician, our parents (who did NOT want us to end the venting), and spent two days going through all scenarios. It was made clear to us what to do when the nurse who was with her most of the three days took us aside and said, "You are both brave and good parents. I want to thank you for letting me take care of her while she is resting. I want to say good bye to you now, because I know you are going to let her go. You don't know it, yet, but you will soon know it is time." Phew....I haven't forgotten that...

So, I guess what I am trying to say is that I am so very heartbroken for you, no matter what you decide to do. No decision is simple. No decision is easy. But, when the time comes, you WiLL know what to do. Please know we all are with you and wish we could help you.

I also believe that if it isn't time, you will know that, too...take it one daly at a time...decisions made within a circle of love are never wrong.

Hugs to you and him. May you both find peace. You are NOT alone. Jane

By Mary556 On 2014.05.01 00:04
We are praying for you and your husband, Rempt2. Peace be with you.

By ResistanceFutil On 2014.05.01 06:47
I'm so sorry you and your husband have reached this difficult time. Both of my parents died while in Hospice and I will be forever grateful to Hospice for making the inevitable transition so peaceful and kind.

I wish you and your husband well with the difficult decisions and changes you are facing.

By Rempt2 On 2014.05.01 07:29
Met with hospice dr. yesterday and we told Mike he was coming home tomorrow. I think I saw relief in his face. I really didn't expect him to come home again but after this decision was made I felt it was so right. Thanks again for listening. It's great to have this forum. You don't feel so alone.

By JulieB On 2014.05.01 10:47
Rempt, my heart goes out to you and your husband. I have heard such amazing things about hospice and hope that this will be the most wonderful care. I pray that God will give you strength, peace, tender moments, and hope. Hugs to you... xoxo

By carman96 On 2014.05.02 07:52
I think most of us would want to be home instead of a hospital and hospice is a good way for that to happen. I hope you find peace knowing your husband will be with you, and that hospice will make your husband as comfortable as possible.

By jaxrock On 2014.05.02 11:15
Hospice is a wonderful decision! I think you'll find peace with him at home, knowing that he will have excellent care from the hospice people.

Take care of yourself, too.

By Rempt2 On 2014.05.07 23:59
My husband wasn't in hospice long. He just wasn't strong enough. The nurses were wonderful and the hospice staff were extremely helpful. His journey from normal to incapacity was very short (just over a 1 1/2 years) but it's over now. Hopefully we will get accurate diagnosis with post-mortem. I can't look at his photos now without crying but we had a wonderful marriage and life together. I know eventually I will celebrate that. I have my children with me so that sustains me for now. Thanking everyone in this forum for all their support.

By Grammy7 On 2014.05.08 00:22
Rempt2 I am so sorry. My prayers and thoughts are with you and your family. Just know that he is in a good place now and his suffering is over. I am happy that you have wonderful memories of your husband and your children's support..

By carman96 On 2014.05.08 04:28
I'm so sorry. Glad that you are with family at this difficult time.

By Freespirit On 2014.05.08 08:46
God Bless you and your family, Rempt.

By moonswife On 2014.05.08 10:45
Rempt, I too add my condolences. You have always posted informative, uplifting messages. I have learned much from your strength and have this wish for you. When you have the doubtful moment, (and they will come) that you should have made a different decision, STOP. Think instead about if the situation were reversed what would he have done for you. Having his last days at home were the best, and most loving choice you could possibly make. I have admiration for every thing you have done. Please continue to check in on the rest of us and share your wisdom, and how you are doing. Justine

By LOHENGR1N On 2014.05.08 13:06
Rempt2, My condolences upon you loss. In these long days ahead laugh when you can, cry when you must and take time to heal. May G-d bless You and Yours

By jcoff012 On 2014.05.08 16:28
May you find peace in the days ahead. You are a special woman and a loving spirit. I am so glad you are part of all of our lives. Again, peace. Jane

By JulieB On 2014.05.08 18:45
Oh, Rempt---I'm sorry for your loss. I'm so happy your children are with you and that you have the gift of a good marriage to reflect upon...when you're ready. God bless and comfort you, dear... xoxo

By makrivah On 2014.05.08 19:12
My condolences on your loss. Take comfort in knowing you did all you could to ease his journey. My prayers are with you. May he rest in peace.

By Marilyn-NJ On 2014.05.09 16:32
I'm so sorry. I hope peace comes to you. We all do our best and we can always zero in on the "what if's" but I hope that with time and with healing you will find yourself again.

By daisy On 2014.05.10 04:24
I'm so sorry for your sad loss, Rempt. Condolences to you and your family. I hope that you can take some comfort in knowing that his love and sweet memories will always be with you...

Please know that we are thinking and praying for you especially.

By Mary556 On 2014.05.10 07:43
Prayers for you and your family to be comforted in your time of sorrow.
May your dear one rest in peace. You took excellent care of him. What a great blessing it is for a person to be surrounded by such love every day of his life. Thank you for sharing your husband's experiences with us so we could learn more and take better care of our loved ones, too.

By parkinit On 2014.05.11 22:33
Rempt -

My heart goes out to you. I'm so glad you have your family around. My deepest sympathy to you in your loss. Try to focus on the "good times."

Hugs...

By VioletV On 2014.05.13 18:29
Rempt,
I am so sorry for your loss. It's clear from your postings that you were available and loving to your husband through this very difficult time--and having you must have been a deep comfort to him.

I hope that this transition can be marked not only by the sorrow of your loss but also by the knowledge that you gave your all. May the new pages of your life be writ with joy and peace.

VV

By Rempt2 On 2014.05.14 23:15
Thank you for your support. I'm overwhelmed. God bless you all.


© 2003-2017 MyParkinsons.org · Privacy Policy & Terms of Use
Published by jAess Media. This website and Forum is sponsorsed by people like you