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Thankfully, We Signed Up Early

When I try to imagine caring for my husband without Hospice, I would have had to place Jeff in a nursing home. I could not have coped with the monumental task of caring for him by myself at home.

At 76, we found out that my husband, Jeffery, suffered from a very rare disease. A neurological disease called Ataxia, which is the atrophy the part of the cerebellum that controls the body's movement. First he lost his balance, then walking became difficult, and then he began dropping things all the time. His speech became quite slurred, then his voice became softer until he couldn’t speak at all. He eventually started to choke on liquid, then on food. There was a nurse who’d visit us at home, and suggested if we sign up for Hospice Care she’d let Jeffery’s doctor know. I said, “sure if you think Jeffery could qualify.” He did and that was the beginning of a two year journey of which Hospice walked beside us.

Jeffery declined slowly but surely. I was able to care for him every step of the way. Having my husband home with me, made him happy, which would not have been possible without the support and guidance of the Hospice Care Team from Hawai‘i Care Choices.

Having hospice was very good for both of us. When we started he was still able to walk around the house with the help of a walker. He was still talking clearly. Because we came into the program early, we had their help and support for over two years.

Having hospice was very good for both of us. Because we got help from hospice early, I had a chance to adjust to each stage of physical decline. I learned what I needed to do in response. At every stage of his decline I had confidence that I could care for him because hospice had helped me through it.

When the Hospice Care Team first came in, they made suggestions on moving things in the house to make things safer for both of us, to avoid slips and falls, always keeping safety as a priority. Our Certified Nurse’s Aid, was wonderful. She taught me how to do a bed bath for my husband, turn him in bed so he wouldn’t get bed sores, to lift him from the bed to the wheelchair without hurting my back. What to do if he started choking when he was eating - the guidance was invaluable.

I thought I knew what Hospice did but until I became my husband’s caregiver, I had no idea about so many of the situations that I’d need help with. Gratefully, the Hospice Care Team was there when I needed it.

We talked about what his wishes were. He definitely wanted to be at home and Hospice made that wish a reality. All along the way I could look back and say, “Hospice got me through.”

If I only had hospice for just the last few days of my husband’s life rather than the two years I did, I would have been “all over the place,” not knowing what to do. Even the last 4-5 days of my husband’s life, when things were “circling down the drain.” I thought “I can do this” and if I need help I’ll call the 24 hour nurse which I did. She talked me through how to keep him comfortable. I could never have cared for him in the last 5 days, if not for the support and guidance that Hospice gave me over time.

All the past experience with hospice walking me through it, and constantly reassuring me, that I was doing the right thing. That I hadn’t missed something that I should have noticed. I think it was good for my husband Jeff too. He could see how Hospice’s help made us accept the fact that he was declining and although we didn’t know when he would pass, we knew it was soon. We made our plans, we talked about finances, we talked about where I would live, we got to say all the things to each other that you want to say. I was so thankful to my social worker who listened to me vent, and never ever judged me for it.

He didn’t always listen to what the Hospice Care Team suggested to keep him comfortable as he was a very strong willed man. Jeff found it very reassuring that they would tell him, “this is what we suggest” but if he said, “no I don’t want to do that,” the team was fine with that. His wishes were always honored. That reassured him, that although he was losing control of everything around him, his wishes would continue to be honored even when he couldn’t speak them out loud anymore.

Our Hospice Care Team were wonderful, wonderful people. We formed such close relationships with everyone. I felt surrounded by a lot of support. I don’t see how I could have gone through the last 2 years if I hadn’t had hospice with me.

Without Hospice showing me what to do, how to help him stand up, how to transfer him from the bed to the wheelchair, what to do when he was choking, all these different things they taught me, gave me the confidence to care for him at each stage of his decline. Once we got to another stage, I’d say, “well, I think I can do this next stage with hospices’ help.” I know if Jeffery were here, he’d tell you, he’s such a Big Fan.

Signing up for hospice doesn’t mean you are wishing your loved one to die. You can always leave and come back if you need to. If your loved one improves you can leave, and if they decline, you can come back.

Hospice does not mean you are giving up.

You are, instead, accepting all the help. Hospice gave me a volunteer to go grocery shopping each week, and being in the middle of a pandemic - that was priceless. Otherwise, I would have had to stand in the long lines at the market, and try to get everything I needed in the short time and rush home to care for him – I would’ve been a wreak. Instead, hospice provided me with a wonderful volunteer to do my grocery shopping every week for 18 months. That’s just one example of the different types of support one might not think of.

I’d say if you are a caregiver of someone who is seriously ill – give it a try! There is so much help, support and guidance waiting for you. I had no idea, and can’t imagine not having that support during Jeffery’s end-of-life journey. There is no shame in having someone help you, help your loved one. Hospice simply provides support, they don’t come in and take over. Hospice would always say, what is your goal, how can we help you meet that goal?

What so great about becoming part of the Hospice family, they won’t let you go after your loved one passes. I’ve been called by the grief counselor, I get calls from the social worker. I think every person that we came into contact with contacted me in the weeks that followed after Jeffery’s passing to say that they were still there for me. That they loved working with me and my husband. We’ll never forget you. Don’t feel like you are all alone because we are here from you. If I had done all of this on my own without hospice, I think right now I would feel totally lost but I don’t because I know I’ve got this group that will not let me fall.

We were married for 57 years, moved to Hilo in 1967 from Oahu. Jeff started out as an attorney and later became a district court judge. I was a school teacher and together we had two children. Our adult children live on mainland.

When our kids asked what would happen if I became ill and was not able to take care of Dad, our social worker said that they would come for Jeffery and place him at Pōhai Mālama Care Center until I was able to care for him again. That really gave my children reassurance that both of us were in good hands by being in the program. Pōhai Mālama Care Center was always our backup plan if I needed a rest or if his care was more than I could manage. It also felt good to know that our insurance covered the room and board there if Jeffery needed to go.

Thankfully, I was able to be with Jeffery till the end. Now when I look at my life, I am just taking it one day at a time. We felt it was a blessing not to have him suffer more, especially once he could no longer speak. His passing was very peaceful and I don’t think he was in any pain at all. Death is hard no matter how you look at it, but, for me, I can’t imagine having to go through that whole ordeal without those loving arms, called hospice.

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