I can’t cope while my husband is dying

We are all given assignments in our lives from GOD . Some are more demanding than others , and we ask ...why me ... ! That is a natural question and is probably asked by the biggest amount of caregivers ! The first thing I would suggest is that you go see your husband and pray over him . If he doesn’t know Jesus , do your best to explain that HE is our way to get into Heaven . If your spouse doesn’t seem to totally understand , keep it up anyway GOD will take care of the rest once you open the gateway! That way you also can be comforted too , knowing that he will be going to a better place ! Now as for your part , caregiving is not easy as we caregivers all know ! But GOD gave some of his people the ability to do that task ! Maybe you were hooked up with your husband because you have the talent and love to do what he needs ? I have asked during a tougher day ....WHY ME .... and I feel as though I got an answer ..... BECAUSE You can do it ..,.! My wife and I have been married for 60 years and were going out for 2 years prior to that ! She needs me more than ever and I am blessed to be able to help her ! My biggest prayer is that I will continue to be her helper until she goes to Heaven ! After that I am ready for my trip also ! Stay tough !

@shirleymac, you've got a lot to handle. @tunared, recently shared the breaking point of his day caring for wife. When you are the life partner and primary caregiver, you bear the weight of the emotional as well as the endless practicalities of caregiving. Even with the support of family, medical professionals and mental health support (professional and puppies), your role is particularly challenging.

Members here on Connect get that and we have a boatload of understanding and listening ears - yours whenever you need it.

I'm bringing @IndianaScott into this discussion too. I'm hoping he'll share his experiences with palliative and hospice care, and how much they helped him. He's shared (I'm paraphrasing), that hospice care near the end allowed him to be the husband again and leave the caregiving to others. It might be worth a discussion with your husband's care team to find out if it is time for palliative or for hospice care.

Hello, @shirleymac I was saddened to read your post. I’m Scott and lived through trauma similar to yours with my wife.

I did find hospice care to be a wonderful form of medical support for my wife —and for me. It was the first time her care was truly patient-first.

I hope you find it a help, too.

I’m happy to share more of our experiences if it would help.

Strength, Courage, & Peace

Thank you for your caring response. We are religious and I pray for him every day. I also ask for guidance in what I do for my husband.

Thank you. He is on hospice care. The fact that it was time for hospice was very difficult to accept, but it helps to know he is getting good care, for however long he has. I know it’s best.

Scott, I have followed your journey and although I know many have been through this and are going through this, it helped, to share. Before sharing, I had not even told good friends. It helps so much to feel the support of others. I had a heart attack in May and Lou was hospitalized 3 times before this last time, in early October. It is so difficult to think of funeral homes and other end-of-life necessities.
Thank you. I’m just now navigating hospice in a long term care setting. Please tell me what I should expect in the way if help. I don’t even know what to ask, sometimes.

Good afternoon, @shirleymac I am pleased you have found kindred spirits here at Connect. It certainly helped me knowing I was not going through this alone, even if I was doing it alone.

I imagine hospice in each state/area is somewhat different but here are some of the critical assistance we received from our hospice folks. My wife and I were able to do home hospice so some may not relate to your and your husband's situation.

My wife received far more regular checks by the hospice doctor and WAY more and frequent attention from her hospice nurses. We were able to then adjust her medications more often and quicker when they needed to be adjusted. In our case, hospice also delivered all her meds, which was a huge help (but this was before COVID when home delivery became much more of an available service. They also helped arrange for her durable medical equipment needs as those changed as well.

Our hospice staff also gave us some solid advice on who they viewed as "trusted service providers" in our home for her final needs, which she had outlined ahead of time. We still needed cremation services, etc. and their suggestions were invaluable.

I'm happy to answer any more questions too!

Strength, Courage, & Peace

My daughter has made some calls about cremation services. It seems to vary widely in cost, but I believe she has found a good service and she said they were much nicer than some she called. Such a difficult thing to even think about, for me.
Like you, I have been his only caregiver. Connect has been incredibly valuable, as it not only provided information, but helped me feel less alone.

Shirley- I am so glad that you find Connect to be a source of support for you. While taking care of my husband who had Vascular Dementia I broke my back. It was due to a very large dose of prednisone over many months prior to David really needing my help. It was a no-win situation for my poor back and for David. And I'm small and short and he was tall and muscular.

When I couldn't stand the pain in my back anymore, I called my sister to come take care of David and my neighbor took me to the hospital. I was there for hours and when I got home David was almost out the door, very agitated and there were three other people trying to talk to me at once about what was going on. It was after most people left that I found out what happened and it was at that time that I knew that it was time for David to have hospice. I had thought that he would receive it at home but for us that was out of the question. His for of dementia had made him into a person he would not have approved of.

It was very difficult to make that dreaded call to hospice. But for David and I our time had run out. That night I saw David whisked away in an ambulance, mumbling to himself, looking at the stars as they carried him down our deck steps.

It took me two days and new medications to be able to sit in a car to go to see him. When I walked into his room I was so thankful for the care that he was obviously getting. And in the several days that followed it also included the many answered questions and a deep concern for me. I asked if I could stay overnight, and they made up a bed from a fold-out chair. I spent the next five nights and lots of Tylenol and back medications with David, even cuddling next to him in his bed. If we were asleep, the nurses never disturbed us and gave him his medications quietly.

I had experience with hospice when I took care of my mother many years before that but it was in her own home. This was much different

I consider the Hospice care that David received a four-walled angel. As Scott said, hospice in every state is a bit different. In our hospice, they only used medications to keep a patient comfortable and pain-free. There were no physical restraints and no IVs for David's care. Initially, it was thought that he needed to have better medication management and once that was established he could go home. Unfortunately, it was too late for that. The type of medication that he needed was by shot only. I couldn't give them to him. Those were Hospice's rules. David would not be coming home

I knew that he was in the best place offered to man, beast, and any other living soul that needed special care. I sometimes question if I made the correct decision. I know now that I couldn't have gone on caring for him alone, and the quality of care in my hospice hospital was rated the best in New England and had won awards. I know that I will debate this in my mind from time to time.

I did ask why he wasn't hooked up to an IV and many other questions that came to mind when I was with him. Make sure that you know their policies as far as terminal care. If you don't understand something, ask away until you do.

Like Scott, I'll be glad to answer any questions that you have. I hope you can catch up on your much-needed rest and find peace in knowing that your husband is in good hands and well taken care of.

Merry

Thank you so much for your encouragement. I’m small, too and simply can’t take care of him. Well-meaning family members have asked if I had considered home hospice and it just isn’t an option. I do need to ask more questions and I will. I’m not sure who is a nurse, aide, etc., yet, but they have a meeting on Mondays where everyone is available. In addition, I’m starting to get some names snd phone numbers, which helps, too.
I appreciate all the information I can get. This is still new to me and much as I hate it, there’s nothing I can do to change it.