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Joined: 9/10/2012
Posts: 2703
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I thought I'd give a little update now that my husband has been on hospice for 3 months. The first couple months were a little rough going. This past month began with him sleeping a lot, only awake 3 or 4 hours a day in the afternoon and that's when I had to give him nourishment. I was only able to give him pureed soups, applesauce, yogurt, etc. And he had difficulty using a straw to drink from. He was also having trouble with mucous in his lungs and throat and I had to give him atropine drops and suction out his throat one time.
Then about 3 weeks ago, he had a wonderful time of rallying and he was eating foods he hadn't eaten in some time. He was waking at about 8:00 a.m. and was awake most of the day and peeing and pooping marvelously. It was a very happy time for us.
Now, beginning on Tuesday of this week, we're back to sleeping a lot and eating and drinking little. He even seems to be comfortable staying in bed, rather than getting up and into his geriatric chair. The hospice nurse came on Wednesday and said, "I guess we're back into that sleeping pattern again." I told her he seems to be comfortable staying in bed and I wondered if it wasn't easier on him to let him stay in bed if he wants. Less tugging and rolling and shifting him around. She said I should still make the effort to get him up and into his chair.
At least this season of lots of sleeping and little eating is not so frightening to me now, because we've been through it before. I had learned to look at his nourishment intake over a course of days, rather than a day at a time. If he had one day of good eating/drinking and then the next day slept a lot, I didn't worry. And if his vitals were good, I was especially pleased.
Today his blood pressure was up (It's usually about 106/60 and today it was 134/84) even though he was asleep when she took it. And I've only gotten a little yogurt and grape juice down him. But over all I feel OK with his condition. He's comfortable and not distressed, and that's what matters the most to me.
Today the bath aide and I were discussing the possibility of me taking a 5-day respite to go see my brother, which would mean my husband would be placed in a nursing home. The bath aide said, "You have been doing this a long time. You need a break. You would understand, wouldn't you? (speaking to my husband)" and he nodded his head and said, "Yes". 
So, nothing dramatic to report but that's OK, too. Chaplain and social worker are visiting and I'm thinking of increasing bath aide's help to 3 days a week. We'll see how things go. He seems to be losing weight, but there's no way to weigh him.
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Joined: 12/31/2013
Posts: 1347
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Katrinka you should have some time away anand go visit your brother. You have done an amazing job for a long time. II'm glad your hubs is comfortable. You are an inspiration to us all Love and Hugs PEACE
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Joined: 3/22/2014
Posts: 652
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Prayers for you Katrinka, your husband and daughter. You are such a loving, giving caregiver to your husband. Thank you for the update. I am glad he is resting comfortably as you continue to be at his side.
You are such a role model for me. By sharing your many experiences, they allow me to plan for considerations and options for our future.
May God bless you as you continue your caring and loving role for your husband and family. You are truly an inspiration in your devotion.
Happy early Mother's Day. May you continue to receive Gods many Blessings for today and many more to come.
Debbie
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Joined: 12/14/2011
Posts: 1751
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Katrinka,
You have been such a wonderful caregiver. You have been an inspiration to so many.
I'm just praying that you will have peace in whatever you decide. Just feel God's loving arms around you and your loved one.
Remember, we're all in the same boat; and the darn thing leaks!
Bob 
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Joined: 11/3/2012
Posts: 2234
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Katrina: You are an inspiration to many on this board, including me. I hope you get to take a break to visit with your brother. You certainly deserve a respite, and it sounds like your dh agreed it would be ok for you to go. Take care. Joan
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Joined: 12/4/2011
Posts: 19546
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thanks for the report...we have just finished day 1 on Hospice. Hope it works out that you visit your brother...do let us know
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Joined: 9/12/2012
Posts: 929
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Thank you for the update and sharing. You do so well Katrinka. I hope it works out you can leave. I will be anxious to see how you both do being apart. So if it comes up for me I will have insight.
Angela
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Joined: 2/13/2013
Posts: 2965
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Katrinka,
I am so glad your husband is not in any distress and resting comfortably.
One way to measure weight loss is to measure the thickest part of his upper arm, biceps. By doing this and keeping a record of it, you can see if he is loosing weight. You can also keep track of the measurement of his thigh. Just remember to measure the same arm or leg at the same area.
Hugs and prayers coming your way, LJ
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Joined: 5/4/2015
Posts: 39
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Hugs to you.
If you decide to go visit your brother (which you do need a break), respite will have the capability of weighing your husband. It will either be in the bed they can weigh him, or a lift that they put him in that will weigh him.
God bless you.
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Joined: 12/17/2014
Posts: 1161
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It's good to read your update, Katrinka. It's also good to hear Hospice is visiting and helping. If you request more support are they able to give it?
It sounds like you are rolling with the flow of things as they happen, staying in the moment. I hope you take that time of respite and get some relaxation time just for you.
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