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What a day today!!!! My poor Mark!

KLScoville's picture
KLScoville
Posts: 161
Joined: Mar 2011

Hello all,

So this morning started out really rough. Mark was screaming in pain at 4 am. He took his morphine but still felt like he was "on fire". I called hospice and they said to give him another dose of 1 ml which I did, that settled him down a bit. He asked me to rub hard on his back/spine between his shoulder blades where (unfortunately) I felt a lump on his spine. The on call hospice nurse came over to assest him. He was not letting me test his blood sugar but when he finally did it was high (that was the first reading) and the second reading was 528. Being that he is on a sliding scale anything over 400 and I have to call the doctor. The hospice nurse got a hold of her and told us to give him 15 units, done. During the course of his muscle jerks he did happen to whack himself in the mouth producing a bloody lip. Cleaned his mouth and resting until....

Around noon, I was in the living room and I noticed Mark getting up? Why is he getting up? He already peed this morning (wasn't too bad, not too dark)! Well in the process of me getting into the bedroom he fell and I couldn't catch him. I also noticed that he wet the bed and still had to go. I grabbed the urinal that he got yesterday and tried to help him. You all know how stubborn he is and said he could do it on his own. Well on his own wasn't working since he dropped it (thank goodness it was full) so I preceeded to help him whether he liked it or not. So now he had wet underwear, a wet side of the bed and wet slippers (when he kept peeing). So I got him finished and got him over to my side of the bed. Now being a waterbed I was going to need help. So I called hospice again. I told Mark he may have to go to the hospice house or get a cathader or a hospital bed. Of course being stubborn he said no to all options. Hospice nurse came over to assest Mark since he fell. Nothing broken, just wall burns, kindof like rug burns. But before the nurse came over I came up with a solution that he could handle. I have a blow up full size mattress that the kids us when they stay over. So Mark liked the idea of that and it being in the living room so he can watch tv. I told him that I would rather have him fall from 6 inches instead of from 6 foot.

So now Mark is laying on the blow up mattress in the living room watching golf. I feel a whole lot better. I was a wreck and (thanks mom) my Mom let me vent and think and give suggestions. Just tested Mark's sugar level again and it is still high, doctor said another 15 units. Due to Mark not being able to hold on to things (he kind of throws/drops them and doesn't realize it) I am now doing the testing and the distribution of the insulin. He is no longer allowed to do it. He can still do his morphine to a point but ends up dropping the syringe before and after he takes it. He is not allowed to get up at all!!! We (the little nurse and I) got him to slide back to his side of the bed so I could put him in the office chair and we wheeled him to the blow up mattress and carefully set him in it. He is comfy he says. I did have the head of the mattress facing the couch with the loveseat being a barrier but I ended up moving while he was on it so that the head was on the loveseat and the barrier is the couch. They say that you can move your own body weight so since Mark has lost so much weight he is now weighing less than I am.

Yesterday my daugher brought me over some of her good cooking. She made dinner and saved me some. It was really good and alot. I saved some for today. First real good meal I have had in a long time. I have no use to cook for one since Mark is no longer eating. I have been living off of frozen french fries with melted shredded cheese, bologna sandwiches, popcorn and a piece of fruit every now and then. Her dinner was a very nice change and very delicious!!!

Okay all, that is all I have for now. Thanks for listening!
~Kelly

ddpekks's picture
ddpekks
Posts: 162
Joined: Sep 2011

I do so wish you didn't have to go through all this, but I know you are doing a good job. I hear the love you have for Mark and I know you are doing all you can. But, I worry about you. You need to eat better and take care of yourself. I know that if Mark was able to make decisions he would want you to be happy and healthy. Can't you ask your Mom or Daughter to bring you good food more often? Maybe sit with Mark for an hour while you take a walk?

I know I'm not there and I've no clue what's happening or where you are in your head, but I worry, nontheless. Please don't take offense, because I mean it with all good intentions:)

We are here for you when you need us:)

(((((hugs)))))
Deb

KLScoville's picture
KLScoville
Posts: 161
Joined: Mar 2011

I just got back from the store, got me a good salad. I am trying to eat as good as I can, hey at least I am eating...sometimes I just don't feel like it. Oh yeah I eat Ramen noodles too. I will try with my daughter, she would love to when she isn't working, but my mom lives too far away from me. I am in Florida and she is in Upstate New York. I am sure if she could she would!

Thank you for your concern. I am okay. No crazy thoughts in this head, just thoughts and motivations for my husband only right now. He is resting comfortabley (alot better than this morning). Thanks for your concern, it is really appreciated. I am happy that he is now in the living room. Even though we have a small house it seems so big right now. All he has to do is whisper my name and I am right by his side.

Again thanks Deb!!!
Take care!
~Kelly

jimwins's picture
jimwins
Posts: 1970
Joined: Aug 2011

I agree with Deb, Kelly.

Take some time to do for you - even if it's brief.
You do need to eat better. But I don't often cook
for just me either so I eat pizza, sandwiches and
anything I can nuke. I'm a decent cook but it's
a lot of fuss when you're eating alone so I get that.

Thank you for sharing your day. I know it's hard but
you are great!

Big hugs and lay off the cheesy fries ;),

Jim

KLScoville's picture
KLScoville
Posts: 161
Joined: Mar 2011

I need something to keep me going and not have diaherra...seems I get that when I am stressed and the cheese keeps me from getting that...

I am doing the best for the man I love and cherish! He is going to die with dignity if I have any say in the matter. Told him that he wouldn't if he kept being stubborn because I couldn't help him one bit.

He is now letting me do my caregiving job and is happy about it. That I have taken over.

Thanks for your concern and thanks for listening!!
~Kelly

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

I am sorry that you have had such a bad day, I hope tomorrow will be better.

You are finding some good options that Mark seems to agree to, so you are doing a great job thinking on your feet. But as good as you are taking care of Mark, I worry about you.

Please try to eat better. I know you may not always have an appetite but try to eat something a little more balanced and drink lots of water. Also, please try to get some rest, you sound like you really need it.

Take care sweetheart, you are in my thoughts and prayers.

Hugs,
Teresa

LivinginNH's picture
LivinginNH
Posts: 1258
Joined: Apr 2010

Oh Kelly, I'm so sorry that he had such a bad day. :-( The mattress was a great idea though, and he's comfy too, so that's a big help. I pray that tomorrow is a better day...
All my best, Cynthia

KLScoville's picture
KLScoville
Posts: 161
Joined: Mar 2011

I really appreciate all the thoughts and prayers...just on a whim I call his best friend and a good friend to talk to him. He had issues holding the phone but did talk a bit. Honestly (not to be morbid) I don't know who or what he is waiting for. The Chaplin said that God must have a plan for him that is unfinished. I am trying my best for my husband to let go. I have given him my permission but I guess it is something else. Thank God he is resting now and comfortable. Thank you for all your prayers and I hope that tomorrow is a better day. But today is done, tomorrow is another one.

Thanks all!
And thanks for listening!!
~Kelly

Noellesmom
Posts: 1270
Joined: Aug 2010

Isn't it amazing how strength can come to us even when we are exhausted? And not necessarily physical strength (because that definitely takes rest of which you are not getting enough) but the inner strength that serves us so well when we least expect it.

You and Mark are in my thoughts and prayers, Kelly. Please do take care of yourself.

Hugs!

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