Qualified for hospice; so many emotions

Lynne D

After attempting to deliver a level of care solo, I decided that no mortal should be expected to do, and called a hospice provider for an evaluation. My HWD qualified without question.

Someone once said that seeing a train coming at you through that tunnel doesn’t make the impact any less when it hits you. I feel a surprising gut punch and am overwhelmed with emotion. Love for my husband, relief at getting help, profound sadness…whatever it is it is accompanied with a lot of crying. 

The hospice providers are frank, and suggested that rather than a remodel to provide a ground level bathroom, that a hospital bed (in the future) in the living room with a bedside commode would be perfect. He likes to look out the slider there at the trees, but we have only weeds and dirt near the house. So I am making plans for landscaping so he has something pretty to look at when he is bedbound. I feel weird thinking about the exact spot where he will likely pass.

I do not feel like this is a 6-month countdown, but the reality has really hit me. I also feel privileged to be the one who makes sure he transitions knowing full well he is loved. So many feelings…

I also feel that hospice has rescued me and provided me with some peace of mind. Their services are amazing and the nurse and social worker are skilled and caring. I wish that people in stage 6 of dementia could qualify. I was nearly broken by caregiving duties until he qualified.

Pat6177

I’m so glad you are getting help in the form of hospice. You’ve been doing a great job as the only caregiver but I’m sure it is such a relief to have some support. I’m so sorry for your roller coaster emotions. I can only imagine how painful it is. I’m glad you have this forum.

Joydean

Lynne I’m happy for you because you will finally have some help. I don’t think any of us can truly understand what you are feeling except those that have/or are there. I think as our journey down this horrible road, each day there is some changes and we just keep going. The sadness every day and well sometimes we think I can’t do this anymore. Then we have a short period of time and think I’ve got this. We think this is never going to stop, how much more can our love one go through. 

Prayers for you and your love one. 

Faith,Hope,Love

Lynne, I think you're doing a wonderful job.  I went thru something similar with my FIL.  We had him in a hospital bed in our dining room.  He was able to look out over the backyard and could see bird feeders, squirrels and our dog running and playing.  I always felt it give him a peaceful transition from this life to the next.  I'll keep you in my prayers as you go thru a transition period too.

M1

Lynne, I am sorry that it's come to this but glad for you, too--overall it is good news to have help and I'm so glad it's a competent agency.  It's an inevitable part of the journey, and I'm glad you don't have to go through it alone.  You have been an excellent caregiver and an amazing advocate for your husband.  Courage for the road ahead, you know we are with you in spirit.

White Crane

Dear Lynne,  I'm happy for you that you now have some help.  And while I have not been in your situation, I can well understand the emotional impact this has had on you.  Now that you have some help, I hope you can take some time to breath deeply and know your DH is being taken care of.  Sending hugs and prayers.

Ed1937

Lynne, your emotions are normal. I don't know how you have done all the things you have for your husband. He is so lucky to have you in his life. I think you will accept this new lifestyle fairly quickly, and you will appreciate more the things hospice does for you. I'm sorry it's so hard now.

ImMaggieMae

Lynne, I’m so sorry your husband is at this stage. You have done such a wonderful job taking care of him and now you will have some help. I’ve heard very good things about Hospice and the support and care that they will be able to offer to both of you, not to mention a hospital bed and lots of other needed supplies. Although Hospice is normally 6 months, I’ve heard of many who go through one or more extensions. I even know of people who come off of it and go back later. 

Prayers for you and your husband. I think having the bed in the living room is a great idea for both of you.

jmlarue

I wish I could find the words that would comfort you. Grief is so personal - unique to each of us - and finding our way through it isn't as easy as we might have expected. Our LOs aren't the only ones who benefit from distraction through these tough times. You have a desire to provide your husband with beautiful view of the world outside his window to bring him comfort in the days ahead. I hope the planning and execution of that project will distract from the overwhelming sadness you feel. Create that perfect vista for him and a lasting sanctuary for yourself. Take heart. I truly believe that every ending brings a new beginning.

Jo C.

Dearest Lynne; my heart goes out to you.  There are not words sufficient; but the heart knows and understands.

You have often given so much inspiration; you are to be commended for all you have done  and continue to do.

The idea of creating a lovely and loving landscape for your husband to enjoy, is brilliant and is so you.   May this project of love turn out to be a brilliantly peaceful view that you can both enjoy now and that you will have into the future.    I am delighted for you in that you are receiving Hospice benefits through an excellent entity; that is a large blessing for sure.

Please let us know how you are doing yourself.  Such profoundly difficult and challenging times in so many ways.  I think of you often and send warmest of thoughts and best wishes to you as you continue on to the transition within this journey.

J.

A. Marie

Lynne, I have followed your journey here for some time, and I'm glad you have gotten help. Peace be unto you.

abc123

Dear Lynne, you are an inspiration to me. I've often wondered how you found the strength to carry on. Once you have a routine in place with your hospice team you will feel better and have a special type of peace. I think your DH will feel that peace and it will help him too.

You said you feel privileged to be the one who makes sure he transitions knowing full well he is loved. You are so right in feeling this way, it is a privilege, Beautiful and sincere. M1 told me I was providing safe passage for my mother. I will never forget those words. Those words carried me through the sad times. 

You mentioned having his bed near a window. I think that's a great idea. I'd like to share somethings with you that my mom enjoyed in hopes that you & DH will find pleasure in together and make happy memories. First thing every morning I opened the blinds and curtains so she could see outside. I nick named her Baby Bird. When I called her my baby bird she always smiled at me. Then I would go fill the bird feeder. She liked to wave at me through the window. I made sure the feeder was always full. The birds came and went all day. She enjoyed watching the birds and looking at the trees more than TV. She liked the Blue Jays best. She'd point at them and say "BIRD" so loud everyone looked. 

The coming months will be a special time for both of you. Fill your heart and home with love. Spend as much time with him as possible. Even though my mother was here in my home, I am bitter towards my dad who constantly demanded my time and pulled me away from the time I wanted to be with her. If you have a person like that in your life, please push them aside. Don't let anyone rob you of this precious time with your DH. I am thankful for the memories I do have like spoon feeding her and brushing her hair. Singing to her, holding her hand and saying The Lords Prayer. I told her countless times that I loved her. I know in my heart that I made the best choices for her. During her journey with Alzheimer's disease I was able to make memories that no one can take from me. I choose not to focus on the bad times we had, I have not forgotten them but I won't dwell on them. Lynne you are both in my prayers. 

Battlebuddie

I’m sorry that you are at the point of hospice but glad you are getting help. You will find that they are invaluable. Take advantage of all they provide : supplies, nurse and my favorite the CNAs for baths. It’s great when they come because you get another pair of eyes checking his skin and general manner. 

  You mentioned that you know that it’s usually 6 months , but you didn’t think it would be. Did you think it would be sooner or later? We have just passed the one year anniversary of my husband starting hospice. Never thought we would be still trucking along with hospice, but sometimes them coming on board has a way of stabilizing things. Of course if you don’t decline you “ graduate” , but as in my husbands case sometimes there is just enough decline to keep them in the program. 

   I’m happy for you because just having the nurse to talk to and run things by makes you feel less alone. Good Luck . We are here for you and if you have any questions fire away.  

LilySue

About a year and a half ago DH's primary care physician suggested I check out a hospice program. I couldn't even talk about it without starting to cry, but one morning last January I finally made a call to Silverado, a hospice organization that I believe is nationwide. 

That afternoon a social worker sat in our living room with me, and I knew right away it had been the right thing to do. She helped me understand that it was not a death sentence, but rather an amazing source of help. It's been seven months, and not a day goes by that I'm not grateful for the nurses and the bathers amd the access 24/7 to nurses that can visit for the occasional breathing problem that I find terrifying.

I had zero idea of the benefits available, and quite honestly I was, and am, astonished. I wonder now why I was so resistant, but it was obviously plain ignorance of how the program works. 

My DH is not going to get better, and that seems to be the qualification for enrollment. I knew his prognosis before signing up, so there was no surprise there, just an acceptance of our need for help.

I'm glad you're taking advantage of this service! You won't be sorry.

Just Bill

Lynne you have the best of both worlds. Professional help in your home. That is a huge win. I am glad that worked out.