How to Bring a piece of heaven to hell...?

[pukalania]

Aloha sweet friends... I wanted to ask those of you who have gone down this road of end of life... What were the things that helped your loved one ... It's so horrible to watch my hubby suffer and not be able to do anything ... He is not complaining a tiny bit but I know inside he is so worried to leave us behind ... His body is so weak and he is so uncomfortable but still conscious and understands everything ... He told me today I just want to get a tiny bit better so I can spend some time with u guys ... How can I make him feel better ?

His billirubin is up to 16 and bile duct is blocked ... Nothing can be done for that just let it be... His feet are all swollen ... His abdomen is swollen so he says he feels too full to eat so he only has couple of bites a day...

This is how we will go home with hospice ... So very worried about it... That he won't have the 24/7 medical personnel around even tho just a phone call away ...

What can I do to make this whole experience for him less painful ... Fill it with good memories ... Give him peace... Make him feel better ? What are the things that help when your family was going thru this

Besides small massages, playing music, room oil essences... What did you do to make your loved one feel better? What helped your family?

Thanks a bunch
Love and hugs

[chrissyrice]

You are his heaven just by being there for him.

You might want to look up the posts by wife of mike (vicki) she shared her story here about her husband Mike, last fall during his end of life and hospice. Mike died on Jan 1st this year.

Lots of help from hospice and take care of yourself too.

Prayers for strength and comfort and peace.

Chrissy

[bitchslapped]

Hi pukalania, A very tough time for all of you. There are so many things to do to make our loved ones feel loved & cared for during this time. Has there been any discussion about paracentesis to relieve the abdominal fluid for comfort? It is temporary relief & may very well need to be repeated...but if he cannot eat it might be something to inquire about. Try to get high protein drinks such as Boost or Ensure down your DH, adding his favorite fruits or a scoop of ice cream if you have to. If he is still mobile, you might consider medical grade compression stockings for the swollen legs + a good heavy lotion to legs & feet a couple of times a day to maintain skin integrity. This may be something your daughter can help with as well. Daddy might enjoy the attention. Also keep his legs elevated on pillows while sitting or lying down w/the heel of the foot slightly off the pillow. If you find he is not moving around much, you might have him or you exercise his ankles up, down, all around to keep blood circulation going, muscle tone a few times a day ( approx 10 times ea foot) until he is no longer active at all.

I used Bed Buddies (moist heat) for bone pain or aches & pains that were very soothing.

This will take a lot of strength to get through this, especially w/you having a young daughter. You will get through this & you will do a wonderful job for your DH. Some things will just come naturally as you seek to make him as comfortable as possible. Always look for ways to make things easier for him. Also consider safety such as getting rid of throw rugs around the house...any trip hazards. A walker, a wheel chair, hand-held urinal for convenience down the road, bedside commode. All things hospice may suggest down the line. It is a scary right now, this unknown territory, but you will adjust to this new role in managing DH's needs w/the help of hospice.

Best Wishes for strength & comfort to you. My heart goes out to all of you. We are here for questions.

bitchslapped

[pukalania]

Thank you Chrissy .,,Vicki's posts are always such inspiration ...

Thank you BS I will ask about that , we have the socks too good idea

Xoxo

[weisssoccermom]

Recently when a friend was dying of pancreatic cancer....she was suffering...physically and emotionally. Her family (not saying you are doing this) refused to talk to her about dying, about being ok, about being able to take care of themselves. They didn't want to think about it, didn't want to deal with it and felt that if they said anything to her, it would make her feel as though she wasn't needed. We finally convinced the family to just talk to her...one at a time...and let her know that while they didn't want her to go, while they loved her and while they wished she could stay around that it wasn't about them...it was about her and that they understood that she was in physical pain and that it was OK TO GO! Now, some people may say that sounds 'mean' or 'cruel' but, in reality it helped her calm down. Yes, there were tears but she was finally able to let go and accept the fact that although she would be deeply missed, her family would be ok. They would survive..and while they would always remember her and love her deeply, they would be ok and life would go on. Up until then, she had been focusing on everyone else and not on her....when they basically gave her permission to let go, she focused on herself for once. Her breathing calmed down, they were able to get her pain under control and she was just calmer and passed away, IMO, with less pain and agitation.

From my very limited experience with hospice, anything like paracentesis wouldn't be allowed and please allow him to decide whether or not he wants to eat. M's family kept insisting that she should eat...have some soup, get your strength back, etc......bad idea. Let your husband and his body decide what he wants. IF he wants something, great, but don't try to get anything down him if he doesn't want it. As cruel as it sounds, it is only more uncomfortable in the end if the patient's body is shutting down and you try to give him liquids/food that he doesn't want. His body will know what it needs/wants....let him call the shots. For M's family, what helped her the most was laughter....yes, she liked the soothing music and that type of environment, but she really liked to laugh. You could see it in her relaxed expression and in her eyes which opened more often and said THANK YOU when you brought back happy memories.

Just be there for him. Talk to him. Let your daughter (if both are ok with this) get up in bed with him and give him a hug. Take some pictures if everyone agrees. Let him smile and be happy. Let him realize that he is making memories for his little girl. If he is able and wants to, perhaps he can do some video for his daughter. I know that before Terry passed, she desperately wanted to record one of those Hallmark Christmas books for her youngest granddaughter but it didn't work out. Feeling better isn't just about the physical aspect....remember the emotional one as well.
Hugs,
Jaynee

[Laurettas]

Pukalania, one thing that I don't think many people plan well enough for is to have sufficient people available to help at home. Hospice is primarily just an advisory group telling YOU what needs to be done for your loved one. They do very little hands on care so you or someone else is going to have to do almost everything. If I ever had to do it over again, I would make sure there were at least 3 people available at all times for caregiving. If you are beyond exhausted, you fail to see many things that could be done and don't have the emotional capacity to be present as fully as you should be. Also, there is nothing wrong with keeping him in the hospital if his physical needs are great. Dying at home is not the best for everyone.

I am so sorry that you are at this point and hurt thinking about all that you are going through right now. May you and your husband have peace on the journey.

[Cb75]

I am so sorry. I wish I could add, but from a perspective of the patient, cancer is lonely, just being with him may be enough. Just lying there, watching tv, being near him....

cb <3

[surfingon]

My heart goes out to you as a wife who has been through this. My sense is that at this point in your journey, perhaps the greatest gift you can offer your husband is not what you do, but how you are. There is not a whole lot that you can do on the physical plane.

My sole "doing" suggestion (if one could even call it that...) would be Reiki, which was a Godsend for my husband in his final months. He resisted for years, but in the end and left to decide for himself, he discovered on his own that Reiki could relieve his pain and allow him to fall into a deep and peaceful state WAY faster and more efficiently than the Oxycodone he clung to for years.

What matters most at the end of life is a sense of peace, an assurance that one's loved ones will be able to cope, and a tying up of the unfinished business of a lifetime. If your husband has a spiritual tradition with which he feels a strong connection, whatever you can do to encourage that connection/reconnection will be very helpful. He needs to know that you and your daughter will find a way to keep on living without him. The more open and honest you are with your daughter about her daddy's death, the more she will be able to find her own way to find peace and let go. Many of my hospice patients have told me that their children were the most important agents in their own healing process after the death of a spouse.

All of the above means that you yourself must find that selfless spaciousness in which, at least for the time which your beloved husband has left, you are truly accepting of what is to come. Dying people have a vastly expanded consciousness in the time before death; he can feel your thoughts. To find that selfless spaciousness within yourself will have an unimaginably profound influence upon his own state of mind. Let him know that he can count upon you to be the one stability in his constantly shifting world, no matter what may come. Find that enormous courage that is born out of love within yourself. I can assure you that it is there.

Blessings on your journey,
Rachel