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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.
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Member Comments About This Blog Post
    Kathy, I wish there was something I could do for you even if it was just a (((HUGE HUG))). I'm so glad that things are looking a little brighter for you now. I'm so glad that there is so much support out there for you. Praying that things keep looking up for both of you. emoticon
    410 days ago
    Oh, Kathy...big, big MONSTER hugs to you my friend! I have pretty much the same situation with my hubby...always strong as a horse and extremely healthy. So this rapid decline in his health came out of nowhere! I was NOT prepared and with no family and a group of awful 'so-called friends' we had known for some 25-30 years that have gone back into the woodwork...I was blindsided and am still reeling

    I am so very discouraged with DH's lack of eating. I run home after working all day to prepare a healthy dinner and then watch him pick at it and leave a huge amount of the very small portion I gave him on his plate. I know it's not his fault as he is very ill...but it makes me feel like it's all such a wasted effort and one I'd really not even bother with when I'm so pooped each evening.

    Same thing for breakfast...I take the time before work to make healthy smoothies, a nice breakfast and I just get grumbles and not much effort to eat. You can't force someone to eat can you?

    It's all just SO discouraging! So I know exactly how you feel my friend. In the meantime I'm navigating as best I can to get some assistance for his many medical expenses and a shower chair as he gets increasingly weaker. I wish I knew how to do spreadsheets...I bet his calorie count is probably about the same as Tom...no wonder he is down 40 pounds since mid-January. emoticon

    Hang in there and I'm praying for both of you as I know you are praying for us!

    And...I totally agree...spark friends are the BEST friends anyone could ever ask for! emoticon
    410 days ago
    Prayers & Hugs for you & your husband emoticon emoticon emoticon
    411 days ago
    Oh my goodness! How about that I swear I had not looked here first. There must be some sparklove in the air! I have so much to say in response to your lovely comment and will write more when I have a chance. Beautiful post and I have to say the sparkfriendship here has made such a difference.

    I am thinking of you and your husband and praying things get better.
    411 days ago

    Comment edited on: 5/28/2019 8:29:27 PM
  • no profile photo CD14322774
    So glad you had some support and finally had a bit of a breakthrough. Praying it's all downhill from here and things start falling back into place!!!
    411 days ago
    I'm so glad to hear you're getting some support. It makes a world of difference knowing that others care and you're not alone. I remember a time when I was temporarily disabled by a minor surgery and had to laugh at the two ladies with PhDs handwashing my dishes. Bless those Stephen ministers and pray for them too.
    411 days ago
    Praying that things will continue to improve!
    I am a firm believer in prayer and you have
    mine!Have Faith! emoticon
    411 days ago
    emoticon I hope you get the help and support you need. emoticon
    411 days ago
    Those numbers -- both the dramatic weight loss and the number of calories actually consumed -- are scary, and I would be feeling just as frantic as you are. Good thinking on the spreadsheet. I am so relieved to know that your husband will be receiving home health and PT visits, and that you are finding support from your church for both of you. It is good to know your kids are helping when they can. Give yourself permission to allow others to help you.

    I don't know if the doctor has suggested this, but one thing that really helped my father swallow his soups, cereals, beverages (including Ensure) and smoothies was the addition of a powder called Thick It. It might be something to ask about when you see the nutritionist.

    I'm sending healing thoughts to both of you.
    411 days ago
  • HOLLYM48
    I am praying for you and your husband. I pray that he will heal and will start eating more. Continue to take care of yourself. Sending hugs!
    411 days ago
    Thanks for the post. And thanks for the update. I'm so glad to read that you are receiving support from those close by. Sorry about the pharmacy; they must be able to contact another pharmacy and obtain the liquid you need.
    What a great idea to do a spread sheet with the visible record; he can't argue with that!

    Strength to you.
    411 days ago
    I understand what you are dealing with to some extent and it is really hard. My husband was diagnosed with a type of blood cancer that was supposed to be non-threatening 99% of the time and he could live with for years. Our “years” lasted from October to the following June and without family, church, friends support, I would not have made it. Trying to get meds and having to beg and even fight with pharmacy’s personnel to get it is very frustrating. Praying for y’all. emoticon
    411 days ago
    411 days ago
    I appreciate the update and really glad to know that today was a better day. Glad to hear of the help from the nurse and especially from your church. We don’t realize that the caregiver needs help even if it’s just talking things out or a moment to get reenergized. My prayers continue and may you continue to see bits of improvement little by little. emoticon emoticon emoticon
    411 days ago
    It's wonderful that life is turning around and providing some positive feedback. For those of us who are visual learners, that spread sheet is a brilliant idea. Do the doctor's have any idea the cause for his inability to swallow and his weight loss? I hope the ministry will be able to provide the help and support that is much needed. Although we are many miles apart, your spark friends and the spark community is here to listen.

    emoticon emoticon emoticon emoticon
    411 days ago

    Comment edited on: 5/27/2019 7:02:42 PM
    I'm glad that things seem to be moving in a positive way. It can't be easy but you are doing great under the circumstances. Hang in there... emoticon emoticon
    411 days ago
    Kathy, what a hard time you have been going through! You always try to present everything in such a cheerful way and usually include humorous takes on various situations, so I did not know the gravity of the situation you're dealing with at the moment. How shocked, devastated, and helpless you must feel at Tom's rapid weight loss. What a blow, after all those years of almost superhuman avoidance of even common colds! My heart goes out to you both.

    But I am so glad you finally had enough and presented him with the facts, and I hope that the spread sheet continues to keep him aware of the seriousness of the situation and motivates him to take action of his own to improve it. With your loving care, and the support of your very helpful children, it seems likely that things will take a turn for the better. I will keep y'all in my prayers. I want so much for him--and you!--to be released from this hardship. Keep going, my dear. You can make it through to the light.
    411 days ago
  • LYNCHD05
    Kathy, reading your blog brought so many memories back for me. Things here are not perfect but they are so much better than a year ago.
    It sounds like you are getting things under control and yes, we cannot do this on our own. Take all the help that comes your way. It does make a difference.

    Sending healing vibes your way for both you and your hubby. You are so right this group is wonderful.
    411 days ago
    Wish I could just wiggle my nose and be there to help. Even just to sit with you and let you know that I will do anything you want. Even mow the lawn, but will have to be the rider. I could make him Homemade Chicken Soup with home made Noodles, or any creamed soup I thought he would eat, with lots of real cream and lots of butter, after all Wisc. is the dairy state, Right? Will continue to hope you get some answers and the help you both need. Hugs.
    411 days ago
    emoticon wish I was closer, I would be there to support you

    Tomorrow contact a compounding pharmacy They make up meds for you in the form you need it since not every can take it in pill form

    glad you have support
    411 days ago
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