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The dreaded decision, Hospice

12 years 1 month ago #13567 by momof4
Aimeth,

I want to make a suggestion to you...Is there anyone who can help you with your little one? I think that this should be included in the help you are seeking. If you don't already have daycare, or school set up, try to do that. If there is another parent that can help with the transportation to and from school ask for it...If there are aunts, uncles, or grandparents, or close friends...try to arrange for sleepovers. This will take alot off your plate, and you will know that your child is taken care of...You will be able to stay in your PJ's and have time alone with your husband during this time. Don't be afraid to ask for help...Please PM me if you need to vent or talk...I have free long distance phone service.

You and your family are in our thoughts & prayers,
Karen


Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

Life isn't about how to survive the storm, but how to dance in the rain.

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12 years 1 month ago #13566 by aimeth
Thank you all for your words of comfort and for sharing your thoughts and experiences with me. Yesterday was a difficult day for me as well as last night. He is certainly not comfortable and we had to up his pain meds. He is very much medicated and can't tell me much of how he is doing or what he needs or wants to do at this point. I spoke with his doctor and she has arrange for a nurse and an aid to come and help out for now. She knows my husband and she does not think he is going to take the hospice visit well so she wants to wait till at least next week to make the call. You see my husband is terrified of dying and that makes it harder on him. But I believe that he is not sure of what is going on right now.

A while ago he had mentioned that he wanted to be home so I will do my best to keep him home. I think that it will be easier for me, considering I have a young child and I need to be there for him too. My husband is very needy so I am going to do my best and try to get all the help I can. Last night I really did not sleep because he kept waking up every hour to be changed. It has been hard but I never thought how hard it could get. It is very stressful, sad, hard, tiring well I guess I am out of words. But again I thank you all for your support. I know that you too are going through a very hard situation and you all still make the time to be there for others. Thanks, Aimeth

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12 years 1 month ago #13562 by Leigh
Dear Aimeth,

My thoughts go out to you and your husband and family at this challenging time.

Ten years ago I lost my mum to breast cancer with metastasis to various parts of her body. Mum deteriorated very quickly and decisions had to be made regarding her ongoing care.

It was a devastating time for the family as we had hoped that mum would recover from the palliative chemo and radiation and share some quality time with us before it eventually took her life.

After a family discussion it was decided that we would prefer to care for mum at home. We also arranged the help of a nurse that would come daily to offer any assistance necessary.

The decision however had to be my mum’s but mum being mum she always wanted what we her kids wanted and that was for her to be cared for at home. It did bring the family closer together during this time as everyone helped in some way.

Mum’s health deteriorated so much that her needs became overwhelming and she started to panic when the nurse left after each daily visit. We asked mum if she would prefer if we arranged hospice care for her and she would get very emotional and could not make a decision.

Mum knew that once she was in hospice care that she would probably never be coming home again and would not agree to be admitted but did suggest visiting the hospice for day care.

The preparation and travelling to the hospice became too much for her and after only two visits it was not possible to visit anymore. During the two visits mum had a chance to see the hospice and interact with the nurses and other patients and decided that she would prefer to be admitted.

I can only imagine the thoughts my mum would have had during this time it must have been a very difficult decision for her.

We all of course had hope, and never let go of that hope until the end but in a way we also accepted her fate and I think at this point mum did too.

The hospice had room’s en-suite with two beds which were for the patient and family member staying with the patient. They were decorated very well and furnished with lovely soothing pastel colours to create a home from home environment. Each room had a lovely view of the gardens surrounding the hospice.

Mum settled very quickly and we could see that she was far more relaxed. The nurses were a button call away which I think mum felt secure in this new environment. We were all made to feel very welcome and the hospice enveloped us all with the hospice spirit and care.

All of her medical needs were taken over by the wonderful hospice nurses. This allowed the family to be able to share this precious time with mum in a totally different way.

After two weeks Mum slipped into a coma and passed peacefully after her very courageous fight for life.

It is a very challenging time for you all and I hope that your husband is able to voice all his wishes to you.

Take care and kind wishes….

Leigh





Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & Cisplatinum

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12 years 1 month ago #13557 by Gene Beane
Aimeth,
I am so sorry to hear this. I would talk to a few different hospice facilities about the choices. My experience was with my dad. He was at in an in house facility, very nice, beautiful grounds, peaceful, he was in a private room , french doors led out to a patio with a huge jasmine tree. They don't grow here in Ohio, so it was a pleasant site, the fragrance was overwhelming. If your family decides he is best at home, which I imagine is the choice of most, they determine how many visits are needed by how he is doing, I am sure his Doctor can help you out there as they co-ordinate it in that fashion. Whatever your choice my prayers are with you and your family, you certainly have been a caregiver that gave it her all, sometimes it just isn't enough to change what we would like to change. Hospice can be very helpful to you, I imagine a break here and there for you is well deserved. In any case you have my prayers...Ginger

I am so happy you did the Disney trip, many memories.
In Sept, 2004 we met my dad and his wife in Vegas, and other family members, the ones we just got home from Vegas with this time. Never thought I'd be with my dad in Vegas, he ate it all up, being with 4 of his children, he was a very colorful person. That March 2005, he died, therefore the trip was more special than I ever realized,,many memories!!

Hospital Cleveland Clinic r/c Sept.14,2007
Surgeon. Dr Stephen Campbell and Gill
Gene Beane..66 Ford Motor Company
Engineer, retired Vietnam Vet

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12 years 1 month ago #13551 by julieann
Aimeth,
I have nothing to offer you since we haven't crossed that bridge yet. I just know what a difficult decision it must be. I would think (again I haven't been there)that Hospice might be a good idea if your husband is having issues that you can no longer deal with alone. It seems it would be the best for the both of you. It doesn't mean you are giving up, it just means that you want the very best care for him. My heart goes out to you and I'm sure you will get many more qualified responses. I wish you peace and comfort.

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12 years 1 month ago #13549 by momof4
Aimeth,

I find it so easy to post replies to others, but I am having a hard time here because I will also be facing this decision at some point.

Did you and your husband discuss this at all prior to him getting so ill? If so, follow his wishes if (it is possible)...then you can feel peace knowing you are doing just what he wanted.

I found hospice to be a God send. Whether at home or a hospital setting is really the choice here. The people are so caring and will help you emotionally as well. Remember if for some reason you don't "Hit it off" with a particular team member, you can request someone else. I will be praying for you, and know if you need to talk...PM me and I will call you...

Karen

Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

Life isn't about how to survive the storm, but how to dance in the rain.

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