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Having her home will make it easier for you to see that she is getting the care you want her to have. But be sure to make time for YOU, Glenn. I know whereof I speak - I took care of my Mom at home here for 7 years. The last year or so was particularly difficult, and I was at it 24/7/365. My "escape" was to go get a fast-food burger and large drink and go park by the ocean and enjoy it for an hour. It really helped me reset my "stress meter" to do that. So please find something that will give you a break and then go do that! :)
 
The learning curve on this home care is mighty steep! But I am slowing getting better at caring for Marie, setting the feeding pump, preparing her medications, and all those other things one has to learn NOW! And I found out today how to administer one of her anti-rejection medications. Our local pharmacist told me to mix the med with apple juice and a bit of warm water to help the med dissolve. Worked like a charm! The physical therapist visited today; nurse will visit tomorrow. And I have a daughter and son-in-law with me until late Wednesday. They are extremely helpful, and I appreciate it.

glenn514:(
 
I know what you're going through. My MIL was brought home at her own request. It's a lot to learn & help is always needed now & then, so we took turns helping out when SIL had to work, etc. Just keep on keepin' on, man!
 
Marie had some difficulty yesterday evening, with two episodes of throwing up. Fortunately, the home health nurse, who lives in our fair city, had just left, so I called her back, and she gladly assisted me cleaning Marie up. We ended up shutting off the feeding pump for a couple of hours, so the stomach emptied itself.

This morning's change...the first one truly "solo" since my able assistant and her husband went home yesterday afternoon...went quite smoothly. I did have to change the bottom sheet, and even that went smoothly! Marie was again complaining about nausea, so I had the feed pump shut off for a time. It is now back on, and I will administer morning meds soon.

A CNA will come early this evening to give Marie a much-needed "sponge-bath." Since she cannot walk or stand, that will have to happen while she's in bed. Better that an experienced CNA try that, rather than old fumble-thumbs me!

glenn514:(
 
On another matter entirely...I am a retired church musician/teacher in the Lutheran Church-Missouri Synod. For much of my career, I wrestled with the distinction between "ADVENT" music and "CHRISTMAS" music. Yet, in all the stress, strain and huge learning curve, I grabbed my earbuds and my Mannheim Steamroller Christmas CD, and have been happily surrounded by some wonderfully-arranged Christmas music on the computer courtesy of Chris Davis!!! Yes, I'm pushing the Christmas season just like all the retailers...but I really needed this musical "kick in the butt" this morning! And all the subtle things Davis does with the carols are amazing with earbuds!!!

glenn514:mug:
 
Marie had a reasonably quiet and restful day today, other than when I was rolling her around, changing her and cleaning her up! She did have another episode of vomiting, so I immediately turned off the feeding pump. The nurse and I are in agreement that we think she's just getting too much formula. I will speak about that with the doctor who will visit AT THE HOUSE on Tuesday.

We received 7-8 inches of wet heavy snow overnight and for most of the day today. It finally quit mid-afternoon, so I went out and cleared off the driveway and sidewalks of that gloppy stuff. The snow in contact with the pavement was partially melted and slushy...not easy for the blower to handle.

glenn514:(
 
Oh, Glenn, I wish I was closer so I could help out. I'm thinking of you and Marie, and sending my love and prayers.

We all say "stay strong", but it's ok to fall apart sometimes too. You're going to be ok, and I know it, and I will pray for strength for you as you go through this.
 
I remember those days with father & mother in law. We were close, & it was hard to try & keep going ourselves with work, families & take care of them too. It ain't easy all the time. Sometimes you just plain will have to pull it outta the basement. we always found the strength somewhere. So just keep on keepin' on. That's all you can do at this point. Ya gotta be tough for her. Let her know, see that you're not giving up.:rockin:
 
I got up early to care for Marie. It is now a little after 600am here, and I've already changed the bottom sheet twice! The feed pump is turned off. I will turn it back on in about 30 minutes...after I clean up the vomit from the carpet. Not a good morning thus far.

glenn514:(
 
Glenn, I'm sorry your morning is off to a rough start. I'm also sorry I haven't posted in awhile. I have been here reading every post. I feel the happiness in your words when there is a good day. I feel the sadness in your words when there is a bad day. I feel your love for Marie in your words everyday. Please know we are here everyday too.
 
I'm sure, like me, you never imagined yourself being a primary caregiver to someone who cannot do for themselves any longer. In many ways it's a grueling, thankless-feeling job - just know that you ARE making a huge difference in Marie's life by caring for her at home, amongst the things she loves. Accept offers of help whenever you can and give yourself a mental health break often!

Know that you are thought of often by many here and that we all lift you up in our thoughts and prayers and give you strength when you think you have none left. The group prayers and good wishes are very powerful.
 
Amen. Exactly my thoughts. I, like Inkleg, check every day, keeping you in my thoughts, reading, but not understanding. Only those who have walked in your shoes can know the pain, frustration, and hopefully occasional joy at the small things that we all take for granted, that you lovingly mush on through.
Please know, although I rarely respond, you and Marie and your family are in my thought and prayers often.
 
I think we may have solved the reason for Marie's vomiting episodes. She is a kidney transplant recipient, and must take two anti-rejection medications. At the nursing home, she was receiving one as an "oral suspension," rather than capsules. Here at home, I have the drug, but it is in capsules. I checked with a pharmacist, and was told to empty the contents of the capsules into apple juice and administer that way. Ah-ha! That is one of the few things that has changed since she's been home!! I will make a few phone calls tomorrow, and see if I can figure out either how to administer the capsules via gastric tube, or how to get the "oral suspension" in place of the capsules!!!

glenn514:(
 
Small steps, and small victories will make your life incrementally better.

Looking forward to the next small victory, and the next improvement. Keeping you in my thoughts.
 
Today's first change was simple and easy, compared to yesterday's. The things one learns in little steps along the way ultimate make a huge difference. Yesterday, I changed the bottom sheet three times, because I was not prepared for sudden "accidents." I was prepared today! I also adjusted the routine today by turning off the feeding pump 45 minutes before I started, and also NOT putting the top section of the bed all the way flat. Hopefully, that will reduce or prevent vomiting.

Today will be relatively quiet: occupational therapist at 900am and nurse later in the afternoon. Tomorrow, however, I will have one daughter and her husband here...so I'm deep-frying TWO turkeys, because we like leftovers! It's just unfortunate that Marie won't be diving in to the Thanksgiving feast we will prepare. But we will still give thanks!

glenn514:(
 
Thank you for your kind words. We will surely find many things to give thanks for today. The two turkeys are all thawed and cleaned, ready to be injected with marinade and deep-fried. Daughter is in charge of the green bean casserole; I'll take care of the elegant mashed potatoes and the oven-baked stuffing. Perhaps the son-in-law can handle the cranberries????

glenn514:(
 
Thanksgiving was a splendid time for my daughter, son-in-law and me to give thanks for so many things over the past four months. I was especially thankful to the skilled, loving, kind and helpful hospital and nursing home staff we dealt with over the days and weeks. Now, Marie has a doctor, nurse, two therapists and a CNA stopping in regularly. I am thankful for them, too. And the Thanksgiving feast turned out quite nicely. LOTS of left over turkey! But I'll have at that over the coming days and weeks. So, it was Thanksgiving with a twist, and we overcame that twist to celebrate and give thanks.

glenn514:(
 
That's exactly the attitude that will pull you through the difficult days, Glenn. "Normal" has changed and you're doing such a great job adapting to it! Marie is so lucky to have such a wonderful, caring husband to see her through.
 
Yesterday morning's first change was a disaster looking for a place to happen. This morning, I was much more prepared, and it went smoothly. I am getting quite good at changing the bottom sheet with Marie ON the bed!!!

I have an issue with a mix-up on one of her important drugs, so I have to run out to our closest Walgreen's today and get it straightened out. Also, the air mattress is supposed to arrive either today or tomorrow. Good, because the pressure sores on Marie's lower back need some relief!

She is currently resting comfortably with CSI on the tube!

glenn514:(
 
Other than therapists, CNA's and nurses, it's been rather quiet around here. I have become more prepared for the sudden surprises during a change/clean up. This morning, I had two surprises...and I was ready for both.

I managed to move some of the stuff around so that the space for the Christmas tree is now open. Hopefully, I'll have the motivation to bring the three pieces of the tree up from the cellar and get it all set up today.

This morning, our pastor is making a visit, and will offer Holy Communion to both Marie and me. I have been communing where I play for worship, but Marie has not communed since early July. She swallows quite well, now, but I believe pastor will use "intinction," where the bread is dipped in the wine, and then offered.

Another blood draw today; nurse and PT tomorrow; CNA on Saturday. Busy, busy, busy!

glenn514:(
 
Yesterday was not a good day. Something was "bothering" Marie's tummy, so while I was caring for her, she threw up, after also throwing up overnight. She slept most of yesterday, hopefully recovering from whatever was "bothering" her tummy. The doctor has proposed that the feeding pump be shut off four times over the course of the day, to allow the digestive system some relief. We'll see if that helps. And that very same feeding pump has developed a squeak that simply should NOT be there. The company is replacing the pump TODAY. And so far, today has definitely been an improvement over yesterday!

glenn514:(
 
Yesterday morning, I played organ for two worship services at one of our LCMS churches in Elgin, Illinois. Our second-oldest daughter...the one that just got married this past October...was home to care for Mom while I was gone. Well, she has become THE HEAD ELF in the Mahnke household! She brought up all three sections of the Christmas tree, put them together, made the electrical connections for the lights, completely decorated it with ornaments, and dug out the Christmas stockings and hung them on either side of the fireplace! And the tree seems to make Marie pleased! She is currently sleeping peacefully.
 
Marie has had a quiet, restful week. The last bout of vomiting was over a week ago. After discussing the situation with a dietician from the company that supplies the formula, I am simply shutting the pump off several times over the course of a day, to let her digestive system catch up with the amount of formula in her stomach. And I even cleaned the carpet where the vomit landed!!! Looks clean now!

The occupational therapist has discharged Marie from further therapy, because there is little or no progress. The physical therapist has two more visits, and then he is finished, as well. I do wrestle with that, but I know that the long-term prognosis is dim, at best, and she will never improve. We are simply waiting for God's time. And, although our Christmas celebration this year will be markedly different from our past celebrations, we still know it is the birth of our Savior, Jesus Christ. So, we WILL celebrate...just in a different way!

glenn514:(
 
To be honest, I've been having flashbacks to pop & my mil when they went through this. You just have to do the best you can & wait for God's verdict. I know how helpless this makes you feel. It can be frustrating & painful. Just pray for the best. That's about all anyone can do. :mug:
 
I'm glad she's had a quiet week, Glenn, and that you've got things worked out well with the pump - must be so much more comfortable for her, and makes things easier for you as well, which is really important!

May you all enjoy Christmas for its true meaning, and may you all be blessed to know you're together even if it is a "new normal" - you're such a good caretaker for Marie. Hugs!
 
Glenn,

My mom told me that I was earning "Heaven Points" while I have been paying the bills and watching over her after my father passed in October. I think you are in the same mode. :) Try to celebrate the holidays the best you can with your family and know that you are in our thoughts and prayers.

Take care!
 
Hi Glen,

I'm pretty new to the forum, so I'm pretty sure you do not know me from a stone in the walk, but I just wanted to show my support for you, Marie and your family. You have it right about the "new normal". Do what feels right for you and your family for Christmas. Keep sharing, and my heart is warmed by all the beautiful supportive posts, as I know yours is too.
Be well, and keep hope alive for healing in all of its forms.
 
The weather here today is grey and overcast...but surprisingly warm [currently 60°F outside]. The grey and overcast is kind of how I feel today. But those posts here on HBT and Facebook warm my heart. Thank you, thank you for your kind support! I am blessed to have such a huge support network! No, it won't make the sky blue today, but it sure does give me strength!

glenn514:(
 

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