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In Hospice Care now

slg
Posts: 200
Joined: Jan 2010

What a ride this has been. It's been up and down for the past two plus years and we now find ourselves at the end of the road and in Hospice care now. I am trying to find the strength to see us through this terrible disease but everyday it has it's challenges.

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

This is good news for you, my sweet. Just this morning a hospice nurse came and helped set right a terrible, terrible night. Every day they save me from wondering if I'm doing the right thing. See if you can get some sitter help, too. I have found someone throught the hospice social worker to come in a few hours a day and she knows all kinds of things I don't know about taking care of someone confined to bed (and we had just mastered the wheelchair)! Having someone to work with me who knows what they are doing is so huge after three years of on-yer-own struggling.

Also use the chaplain and volunteer if your agency has these team members. Their help has also been invaluable to us.

slg
Posts: 200
Joined: Jan 2010

I am not finding the good in this situation. I don't know where you're located and what Hospice you are using but I am not finding this a great experience so far. No, I can not have a stranger come in to sit with my husband. He is not bed ridden yet and is mobile and I was told they will not help him in the B/R or with medication so no I can't leave him with them. He needs to be with people he is familiar with not strangers. So that limits me as to when I can leave and get out for a break or run errands. So far the only thing they have done for us is I don't have to take him to the hospital or lab.

JackieA
Posts: 150
Joined: Mar 2011

but, I am sorry you are at this place, although hospice is suppose to be a great thing. If it is not working for you, I think you can request to go back to seeing Primary Care. We had the choice to take mom to hospital instead of keeping hospice, but the hospice worked well for us. They guided us through certain moments during mom's journey. My mom was bedridden and immobile. It is probably a shock to you right now. The 'hospice' stigma has a lot to do with how we look at things. People have been known to get off the hospice program and live. I know that seems slim, but it happens. For us, we could not just leave the hospice with mom. They are not sitters. I know it is negative to you, but surprisingly, they were a blessing to us. I hope you can find a silver lining in this dark cloud. God bless you.

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

I am hearing you loud and clear, and I'm trying to forget the last few weeks, when Mom was semi-mobile and very difficult to handle. One morning at about 4, both of us nearly ended up on the bathroom floor. It about killed me, so I really do understand. Little sleep, constant worry, lots of new gray hair. I even found that some family members couldn't handle it. After eight weeks straight with no more than an hour off (to get groceries), I had three hours out that restored me so much. I have learned to call and ask for help from friends and relatives, but the asking still makes me cry.

Hang in there, it will get better.

grandmafay's picture
grandmafay
Posts: 1610
Joined: Aug 2009

I am sorry you have reached this place. I was there about 2 1/2 years ago. I lost my husband to colon can after a 6 year battle. Hospice does help and don't hesitate asking them for what you need. Their help doesn't change what you are feeling emotionally. You are losing the most important person in your world. No amount of help changes that. It hurts. You will find the strength, but you never wanted to be this strong. Towards the end, I did pray for a quick and peaceful passing. My prayers were answered. It was still the hardest time in my life. Yes, we want them to find peace and stop hurting, but we want them here, too. Try to take care of yourself, too. Each hospice seems to be different, but most are there for you as well as your husband. We used it only for about a month, and I did appreciate the 24/7 phone number. I used it several times. We also had an excellent nurse. Since we were both part of the leadership of our own church, we did not ask for the chaplain, but the services were offered. Come here as often as you feel like you need to connect with others who understand where you are on this journey none of us wanted to take. Fay

womack1424
Posts: 38
Joined: May 2011

I too had a great experience with hospice care, our nurse was wonderful, and very caring. We also used the 24/7 # several times throughout the process. For me learning about the dying process was invaluable, helped to prepare me for what was to come. I knew what to watch for and how to report to the nurse when she came. We had one bad experience with the CSN and I reported it and they change ours the next day.
This is a difficult time to get through, no matter how good the people are, you are still losing the one you love. Cherish your time, hold hands and say I love you as much as you can.
God Bless you both as you come to the end of your journey together.

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