Spark Friends are Great Friends
Monday, May 27, 2019
First I hope everyone is enjoying this Memorial Day Holiday! It is a dark and rainy day but that suits my mood right now so it's actually comforting.
Second, to all you wonderful spark friends who have been on the short but very long journey with me and my DH - I can't tell you how much you have lifted up my spirits. At a point where I thought there was simply no way I could go on for one more minute I would get a lovely Spark Goodie, an encouraging Spark Mail or a beautiful post on my page. I am truly blessed to have so many loving and supportive friends here on Spark - as well as so many of you who have already gone through this whole caretaking experience or may still be on your own journey.
I married my DH in 1995 - it was a second marriage for both of us. Life was wonderful and difficult for many years. Blending a family is complicated in the best of situations but after awhile it was clear that his family was not happy about our getting together. But to be honest I was a little bit disappointed in my children who were raised to be loving and accepting of all people and circumstances. But we all found our balance eventually and it has been a pretty good life!
One thing about DH - he was NEVER sick. I think he might have had a sinus infection once so long ago that I can't really remember, and there was a cold that kept him quiet for a week or so a couple winters ago.
So to be dealing with this rapid decline (on May 7 he was 181 lbs, 17 days later he was 161 lbs) has been frightening - not to mention a whole lot of work. I have had constant communication with my children and each of the boys has been here to help with yard work. They would do more if there was something to be done. Last Thursday, after 2 trips to the Urologist and an unplanned visit to the ER that night, 2 of my daughters (one had just flown in from Roanoke to attend little Jake's baptism) came to my house and did all the things I would have had to do after getting home. A little thing to them but the greatest gift to me. And my oldest daughter has made us some creamed soups - pretty much the only thing DH can eat other than Blueberry Chex Cereal (weird, I know).
Today we had a visit with a Home Health Nurse - a very nice young man who seemed to be able to answer Tom's questions in a way that it connected. They will be providing for home Physical Therapy and also Home Nutritionist (someone who can help you with swallowing). Yesterday I decided I'd had enough and put together a spreadsheet of what needed to be done and when. Then I wrote down everything he consumed in the day - a total of 478 calories. FINALLY he got it! He thought he was eating "a lot" and drinking "a lot" - well, 478 calories is not even close! And in the whole day he had just over 16 ounces of water.
I'm happy to say that this morning was so much better. And now with the spreadsheet he can see what he's done and how much he's eaten. So far it's still protein drinks and Chex Cereal but I'll take it. I think he's already gotten to 478 calories and we haven't even gotten to dinner yet.
I also met with our Care Pastor yesterday who will be setting up a Stephen Minister for each of us. Just someone to talk to, pray with, and get encouragement from. When I teared up at the pharmacy because they did not have the medication that was prescribed (adult medication in liquid form is nearly impossible to find) I knew I had to do something for myself. I really thought I was holding it all together but apparently I was just holding it all in.
So for the first time in about 5 week's time I feel like maybe things are turning around a bit. You all have been my life line to the real world and there are not enough perfect words to express how much I appreciate all your encouragement.