How to make Hospice Days Better

[jader4]

My husband is in hospice now at home. His pain seems to be tolerable with occasional meds. His digestive issues are always a concern. But primarily, the problem is fatigue and weakness. I thing we are getting a bed downstairs today because getting upstairs to our bedroom last night was difficult. I stood by his side and we did almost a very slow 3-legged race up the stairs. I know things are not going to get better, but I want to make the rest of his time as pleasant as possible. In what what ways do your partners help you the most? What things drive you crazy? Please be kind. While I admire that some of you like to joke and have fun on this forum, I'm a bit sensitive these days.

[Dachshundlove]

Dear Jader4

That the two of you are there together during his transition is the ultimate act of love and commitment. I cannot imagine how sad you are and I’m so sorry. We will all take our turn and he is very Fortunate to have you along side, with your love for him and sensitivity to his needs (as evidenced by this post) in this very special and heartbreaking time. May you both find peace.

[LearnAll]

Your calm and peaceful presence around him will be very helpful to him. One of the biggest concern of men who are at the verge of moving forward in their eternal journey is that they want to know if you will be alright when they are gone. Do Not need to say much in words but just staying close in peaceful ,silent manner and facilitate him to slowly detach from worldly attachments so the soul can leave the body in tranquil manner. Soft ,low volume music with God's prayers and praise is liked by many. Do not be miserly when it comes to anti anxiety and pain medicines. Wish you serenity to change things which you can and accept things which you can not change.

[Tall_Allen]

It strikes me that your support for him going up the stairs last night is a beautiful metaphor for the love and support you are offering him during this difficult time.

I know one mistake I made with my mother was trying to get her to eat more. Her dietician explained to me that in the end stages, the cancer will steal any available nutrients, so eating more was only feeding the cancer. It is very hard to let the care-giving lessons of a lifetime go. My instinct was always to DO something. What I learned was just being there, holding hands, was the most I could do.

[Myhubby58 in reply to Tall_Allen]

Wow,thank You for that Tall Allen, I be trying to make hubby58 eat more..but I will not push anymore..right now he is on a clinical trial (Erleada)..much prayers is needed..

[jader4 in reply to Myhubby58]

I think my husband was on that for a short time too. The effects on appetite and even keeping food down were terrible for him. It got better when he stopped the pills. Sadly, I've gotten used to him eating less now. I put healthy and sometime unhealthy (Christmas cookies we're being brought daily) food where he can have it if he wants something. I give him smaller meal portions and occasional snacks.

[noirhole]

Being home is a blessing. Familiar surroundings and sounds even pets if you have them. We have stairs and that worries me when the time comes. The thought of a hospital bed in the living room would be very difficult for my wife. Sending positive thoughts and prayers your way. I hope your time together is beautiful.

[Shooter1]

Remember one of the most pleasant steps I went through was having my wife wash and shower me when I was incapable of doing it by myself.. we did smile at each other a bit as she got almost as wet as I did. Sure felt good to be clean.. Luckily I recovered from being an invalid, but the memory of a nice shower still holds a place in my heart. Best of luck to both of you.

[Hidden]

You are his Angel God bless you . I’m blessed with love also . Just hold his hand . Be with him . 🙏❤️

[MarkBC]

This is a lovely post. Thank you for sharing. Your husband is fortunate to have you with him. I have no advice to give you and only wish you the best as you cope with this difficult part of your lives together.

I like reading about scientific advancements and prostate cancer care in this forum. I also like reading posts from people dealing with end of life issues. I know that I am going to end up in that situation sometime in the next few years and I like to know what I might expect. Thank you.

[Collarpurple]

I think remember a silly time that one of you did. Maybe talk about when you first saw himor who went after who.Leave no moment or talk that needs to be said

Leave no regrets The reason why I say this is when my mom was dying I wanted to crawl up into bed with her in the hospital just for that moment and I didn’t ,my regret

I hope I have helped you in some little way

[Emmett50]

My Mum had been in an acute care hospital when the doctor gave us options for her. Based on that kind doctor’s realistic appraisal of her prognosis, we had her returned to the nursing home where she had been living. It wasn’t technically a hospice but functioned much the same way. One of the aides who was fond of Mum told us that most of the residents had been without loving touch in a very long time. The staff had their work to do and treated people with dignity but their touch was for a task to be done. My sisters and I took turns climbing onto Mum’s bed and wrapping her in our arms. We brushed her hair and massaged lotion on her limbs. We always included her in our conversations though she didn’t seem very present. We sang old Mitch Miller songs she liked and hymns that she loved. We returned a lifetime of kisses to her too, She passed peacefully about 10 days after her hospital release.I learned a lot from that experience and have since used that knowledge for several relatives that did enter hospice over the years. It is a privilege to be a part of a loved one’s transition. I can tell from your message that your instincts are right on and you will have the grace to help your spouse have a peaceful transition. Touch him with your hands and your heart. You are both in my prayers. Love, Mary

[Grouser]

I am Grouser1 wife I had been a hospice volunteer learned and received much more than I ever gave. If you feel comfortable learning the stages of death it might be helpful to take away your fears of the unknown. Your hospice may have reading materials for you. TA was right on (again) about not pushing food but provide ice chips and cool cloth on the lips. My folks loved music it is said to reduce pain. Get some nice lavender lotion a foot massage is a welcome touch. Blessing to both of you keep asking for what YOU need.

[Lavender22]

Hello Jader,

My mom liked it when I rubbed lotion on her hands, back and shoulders and gave her foot rubs. And we would talk—

[Mathes72]

I am in the same place,try to get a hospital bed from hospice, I had one from day one makes a big difference, take your pain meds eat what you want be patient with your wife she has a hard job.good luck

[jader4 in reply to Mathes72]

We got a hospital bed yesterday. We set it up in a small room downstairs with a guest/couch bed in it, so we can both sleep in that room. So far we haven't slept there, but it's ready.

[Mathes72 in reply to jader4]

Be careful going up or down the stairs

[HopingForTheBest1]

Please take comfort in that you post and related responses are so helpful to us warriors and caregivers.❣️

[PeteLG]

Shalom

[jader4]

Thank you all for the caring responses. Many of them also have very good advice. Keep posting. So many of you have great ideas and experience.

[kick-prostate-cancer]

As others have already stated ... touch is so very important. For BOTH of you. Massage, head rubs, shoulder rubs. Hold hands. Share special memories. You might want to tape record some of your special conversations. Singing ... any type of music is great.

You must remember to take care of yourself, as well. A nice bubble bath if you like them. Get a massage for yourself if you can.

Share with him that you will miss him terribly, but will make it through.

None of this will be easy. All you can do is make it the best it can be.

[Boywonder56]

If any close ,goodfriends have not said goodbye now is the time...funerals and memorials are forthose that didnt...and i know it will make him feel good...even though a bit uncomfotable because of his state...but the touch of love from those he knew is nice....for both...

[User2008]

God bless you and your husband. Be with him, talk to him, comfort him. We will all be there someday.

[Hidden]

Thank you for your post. My husband is on hospice at home too. I haven't posted much since he stopped treatment because I didn't want to discourage those still fighting. We put his hospital bed in the living room since it was the most convenient place and it doesn't seem odd at all. It's also a good place for family to visit. I also had to learn not to push him to eat. Let him listen to his body whether he can. Our hospice team is excellent medically and spiritually. I feel so blessed to have this special time with him. The main thing that my husband hates is having to depend on me to do everything. I make sure he knows I take care of him with love and he is not a burden. His pain is controlled and he sleeps most of the time now. But we still have times that we laugh and he gets hugs and kisses everyday. When his time comes I will hold one hand and God will take the other. I will pray that for you also.

[jader4 in reply to Hidden]

Thank you. Sending you love and support. I feel like I can get through anything now. But I worry what will happen when my caregiving ends. It is giving me purpose.

[j-o-h-n]

Love him like you did when you first met him....... Try to make him laugh.....If he likes TV put it in his room.... Bless you both....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 12/15/2020 6:54 PM EST

[ctarleton]

I mentioned this Post to the wife of a man named "Doug" who was in a local advanced cancer support group that my wife and I also attended. Doug died a couple of years ago in hospice at home due his advanced prostate cancer. Reflecting back this week, here are some of her very generously-offered thoughts about that time in their lives.

1. Be responsible for organizing his meds and administering them to him on a consistent timetable. Doug had several, all with different schedules to be taken; I made a spreadsheet and marked it off when he took them. You may have to set an alarm especially at night to keep the drugs in his system. This is important so the pain doesn't get away from him, otherwise it can take a very long time to get it and keep it under control again. If he needs pain meds a bit sooner than directions say, give it to him when he needs it. I mean, we are talking about end of life and you don't need to be super strict.

2. Eating habits change drastically. Portions changed to half of what he ate before. Foods he loved before, he could not tolerate or they tasted terrible now. Doug needed "sauce" on everything. His mouth was so dry all the time that all food needed more moisture. Soup and milkshakes were the best, or scrambled eggs with very mild salsa. Often he wasn't hungry and didn't want to eat but I made sure he drank (with a straw) Ensure to help keep some strength up.

3. Fatigue and weakness - a major problem. I encouraged Doug to get out of bed everyday, but in the last month it became later and later. His last week of life he only got up once (his surge of energy) except to use the bathroom. Thankfully I could still help with that and saved him some dignity. A catheter was painful, so we did not go that route, but I know men that a cath would not bother, so that may be an option down the road. Hospice will give you any assistance you need i.e., shower chair, walker etc. And oxygen the last week seemed to calm and allow easier breathing.

4. Doug allowed visitors up until two days before his death. Our house was like a revolving door and tired him out, but he enjoyed the company and felt it important. Make the visits SHORT.

5. Spend as much time at home as you can. Let others help you by doing your errands or grocery shopping. Your time with him is limited; make the most of it. Don't hover, but being there and oftentimes just sitting with Doug helped. You don't have to always talk. But speaking of talking - try to think of things you might need to know about the house, yard irrigation, pool, etc. Stuff he knows that you don't. Talk about this stuff, you'll be glad you did later. Renew your Trust and make changes now if necessary.

6. Depression and coming to terms with End of Life - It broke Doug's heart to see me doing/taking care of the things he used to be able to do. Stay compassionate, patient and understanding. They need this more than ever.

[Hidden]

Hi, jader4:

It's a difficult time to go through.

My wonderful husband just died 6 weeks ago in Hospice, after a few months of palliative care at home. We had wanted and planned for him to die at home, but it didn't work out that way.

I was his sole caregiver, with help from his compassionate palliative nurses. No-one else knew he was ill (his wishes). Strangely, COVID was a good "cover" story and excuse for not seeing anyone.

I just finished writing a rather lengthy reply to you - therapeutic for me, but too long to post here, so most of it got cut...

Some thoughts / regrets (based on my experience), in no particular order:

* I regret that my husband didn't die at home as we both wanted and had planned. I did everything I could to keep him at home, but circumstances dictated otherwise.

I will never forget the understanding palliative doctor who told me, "'Home' is where YOU are. It's not a house." What an angel!

* In the end, Hospice was the best choice for us. It allowed us to just be together 24/7 for his last few days, in a quiet room with peaceful background music, which we wouldn't have had at home. The compassionate nurses provided care for BOTH of us, and I could relax, knowing that my husband was in expert hands. I also got some badly-needed sleep - and decent meals.

As long as you are the care-giver, you are on constant alert for providing around-the-clock medication delivery, care, and comfort, and you constantly worry if you are doing the "right thing." I often forgot to just be my husband's buddy and companion.

* While my husband was at home 24/7 in bed, I wish I had spent more time just being with him in our bedroom. We did have a "duvet day" once - I spent the day in bed with him, just reading, snoozing. Didn't get dressed, and snacked my way through the day. It was lovely, even though he didn't eat. I wish I'd done that more often, but, being at home, there's always "something else" to do. Running in every 15-20 minutes to check on him doesn't count.

* My husband enjoyed hand holding and massage to a point, and later on, he was no longer able to tolerate either. After he was sedated and no longer conscious (his last week), I held his hands, touched his face and body, and ran my fingers through his hair a lot, because I NEEDED to. I told him what I was doing at the time, because I don't think he felt it.

Also, I frequently told him how much I loved him, and that I'd be alright. After a period of silence, I would always let him know that I was still there and keeping him company.

The experts say that hearing is the last sense to go. I'm sure he heard me - there were a couple of signs.

* I kissed him frequently on the forehead and nuzzled his neck, because I NEEDED to.

* Look for humour. Yes, even in Hospice, there were 3 incidents that were humorous.

* Organization is key. I set up the schedule for my husband's meds, and then set 3 timers as reminders for his different meds. 24 hrs / day. It was the only way I could manage. Even so, I wish I had understood the importance of taking meds on schedule. Since initially he wasn't in pain when lying down, I disliked waking him up to give him his meds, and instead waited until he woke up. Not a good idea. The meds needed to be in his system constantly to be effective, and I didn't realize that at the time.

* As others have said, don't push food (liquid is a different story). Our palliative nurses told me that his body will know if / when / how much to eat, and towards the end, his body won't make use of food anyway.

When my husband was still eating, he had several unusual-for-us cravings, including junk food, so I always ran out to buy them, just so he would eat something. He'd have a few bites, then I was stuck with eating the rest, but I always made sure to have them on hand "just in case."

After weeks of lying in bed 24/7 and 2 weeks of not eating anything, my husband had a sudden burst of energy. He got up, got dressed, walked out to the living room without my help, and sat down on the couch to eat his craving of take-out Chinese food - with chopsticks. I got really hopeful; unfortunately, it lasted only a couple of days, but it was wonderful. It turned out to be his "last hurrah" that our nurses said might occur - 2 weeks later, he was gone.

* Practise gratitude. We still had a lot to be thankful for, while my husband was ill.

* "Look after yourself. Get out and do something for you." It's easy for others to say, but difficult to do. I never wanted to be anywhere other than at home with my husband. Besides, I have lots of time now to start looking after myself and do something for me. I have no regrets.

* After my husband died, I REALLY regret that I let the Hospice nurses rush me into removing his body - they couldn't get us out of there fast enough. The Hospice policy is 8 hrs after your loved one dies. The Funeral Home policy is 24 hrs, if he dies at home, which is what we had planned.

I lost the last 1 1/2 hrs that I could ever spend with my husband's body - it hurts!

When I'm ready, I'll call the Hospice director to give "constructive feedback" about the head nurse.

Apologies for the lengthy message, but I do hope that you find some of this information helpful.

Wishing you and your husband much peace in your journey together.