Indignity layered upon indignity

Paris20

I just returned from the rehab unit at our local hospital, where my husband was admitted after the stroke he suffered last week. He’ll be there for a few weeks but I don’t think he’ll ever be well enough to come home. I watched my husband, right side paralyzed, head bent into his chest, mouth askew, and I asked myself, “Hasn’t he suffered enough? Isn’t dementia bad enough? Why is indignity heaped upon indignity?” If my husband knew what was happening, he’d be mortified. Instead he’s confused and depressed. But I DO know what is happening and it breaks my heart.

M1

Paris I am so, so sorry.  Sounds like he will likely need nursing home care after this.  I hope he is comfortable and remains so.  Have you asked for a hospice consult, or is it too early (I can't imagine that it is...)?

Gig Harbor

I am so sorry Paris. As a retired ER nurse I just want to give you a heads up on what might happen in the near future. He is at a high risk for pneumonia or a UTI. If this happens the nursing home will ask you what you want to do - treat or not treat. It will be a very hard decision to make without having much time to think about it. If you decide not to treat either condition and to just keep him comfortable that is OK. Just because technology and drugs exist does not mean you need to use them. I talked to a lot of families in the ER over the years and helped them with their decisions. Mentally prepare yourself for when this time comes. I have told my daughter that if I have a stroke or dementia she is to say absolutely no treatment even for something simple like a UTI.

Joydean

Paris, I am so very sorry! I do hope he is as comfortable as the doctors can do for him. Prayers for you and your dear husband.

Jeff86

Adding my voice to the chorus here to say how sorry I am for what both you and your DH going through.  Your journey was hard heretofore, and now it has gotten harder still.  Hoping your DH gets the care he needs, and that you are looking after yourself.   

Holding you both in my heart.

Ed1937

Paris, that is much more than anyone should have to deal with. I'm so sorry.

Donr

Gig Harbor wrote:

I am so sorry Paris. As a retired ER nurse I just want to give you a heads up on what might happen in the near future. He is at a high risk for pneumonia or a UTI. If this happens the nursing home will ask you what you want to do - treat or not treat. It will be a very hard decision to make without having much time to think about it. If you decide not to treat either condition and to just keep him comfortable that is OK. Just because technology and drugs exist does not mean you need to use them. I talked to a lot of families in the ER over the years and helped them with their decisions. Mentally prepare yourself for when this time comes. I have told my daughter that if I have a stroke or dementia she is to say absolutely no treatment even for something simple like a UTI.

Your response was very good and to the point. Thank you for the information.

Paris20

Thank you all so much. This is the best place for advice and support. I’ve already gone through that series of questions about what-if-care and the bottom line will be to keep DH comfortable, nothing more. My daughters agreed. DH is currently in the hospital rehab unit. Their goal is to keep him for four weeks and then move him to an assisted living facility that offers special nursing care options. My daughters want me to try that. My more realistic prediction is that cannot happen. He will wind up in a skilled nursing facility unless a miracle happens. I just hope the hospital doesn’t tell us soon that he must go elsewhere if his progress is minimal. Tomorrow I rush down to NJ for my mother’s hundredth birthday celebration. Then I’ll fly home.

abc123

Dear Paris, you are both in my thoughts and prayers. I am so sorry this has happened.

David J

Paris, I am very sorry for what has happened. Sometimes life just sucks. But, you get to go see your mother for her 100th birthday and don’t have to worry about your husband. Have a safe trip.

ImMaggieMae

Paris, I am so sorry. Will pray for a miracle, whatever that turns out to be. 

I’m glad you will be able to celebrate your mother’s 100th birthday with her. 

Lynne D

Paris, I have nothing to add, but echo the positive thoughts coming your way.

Buggsroo

Paris,

I am sorry for what you are dealing with vis a vis your husband. I am really glad you can see your mom on her 100th birthday, but feel sad for your sadness over your husband. I send you a virtual hug.

Inden Mom

Paris, I'm glad that you will see your mom for her birthday.  Prayers for your DH.

White Crane

Paris, I am so sorry this has happened to your DH.  It is heartbreaking to watch the one we love in such a state.  My heart goes out to you and to him.  Sending hugs and prayers.

Brenda

Scooterr

Paris, my heart goes out to you. I know you must be totally exhausted, mentally and physically. No one should have to endear this much pain. I know it's hard to do during these times but try and take care of yourself. You have a lot of people on this forum behind you. Praying for you.

toolbeltexpert

Yes Paris we are praying for ya, and there are so many on the forum and in churches praying for us all.

Pat6177

Paris, I hope the trip to NJ for your mother’s birthday celebration went well. Just thinking of you.

Paris20

I celebrated my mother’s hundredth birthday and had a wonderful time. I flew home that night. As tired as I am, it was without doubt the right and best thing to do. My husband is making a little progress in rehab and we have found an excellent assisted living home that provides nursing care, PT, etc. for extra money. We are lucky to have this facility in our town and I spoke to friends who had parents there. They had only praise and assured me that from memory care to therapy to feeding, he will be well cared for. I, however, will suffer the effects of a radical cashectomy. Only our long term care insurance and a few services covered by Medicare will help pay for it. Our financial advisor said we can afford it. I hope he is right but I cannot put DH in a nursing home. It would kill him, and me too.

Jeff86

Thrilled for you, Paris20, that you made it to your mother’s 100th b-day celebration and could be part of it.   And nice to hear that your DH is somewhat improved and you have a good AL solution for him.  

You have been a dedicated caregiver and it’s encouraging to hear that some things are falling into place nicely.  Sorry the pocketbook will suffer for it but as we say so often with AD, it is what it is.

Marie58

So glad you went to your Mom's birthday party and that you found a good place for DH. Hope you can get some rest. Blessings to you both.