A Week in the Wheel Chair

Sunday, September 1

Wheel chair to master bath routine
accompanied by Ziggy

A week ago hubby has a relapse of not being able to walk. We make some progress by Sunday morning. Hubby can use the walker instead of the wheel chair to come to his "Archie Bunker" spot. No longer does he have to be lifted as he can get up, and take a few steps to get in the wheel chair or use the walker. Basically this has been a week in the wheel chair, however, with sweat pants, the urinal and bathroom adventures for Kenny and myself. I wheel him to the door of the master bathroom and he can get out of the wheel chair and on and off the toilet seat. Dog Ziggy often joins for the ride.


Sally and Jake come over before their church with breakfast biscuits from Burger King. Hubby hardly eats any of this and Jake eats half of his.

That morning we sing "Happy Anniversary" to Sally and Jake. Jake couldn't believe it was his 40th anniversary. I had planned a surprise anniversary party for them, but that party totally fell apart. What a bummer! I told Sally about it and she was pleased at all the effort I had gone to. She is always doing things like this for others and it was her turn to be fussed over for her 40 years with Jake.

"I guess 40 good years is not bad," Sally says to me. We both know that the next years will be very hard. We are going into a new normal. Our anniversary in April hadn't been spectacular as I wrote on this blog. When they have Alzheimer's, every day seems the same to these guys--anniversary or not.

Jake and hubby decide that we four need to go to Stone Mountain again. We all have been there, but not the four of us together. Sally and I say under our breath, In your dreams, guys. Sally and Jake go on to their church.

Our church meets in the afternoon and hubby thinks he will go, but that also turned out to be in his dreams. He is back to forgetting he has knee problems and forgetting he uses the wheel chair or the walker.

I text Kenny that I am going to church without hubby so that maybe he can check on him. The afternoon sermon by our Associate Pastor is awesome. The essence of his sermon is that we will not enter into God's rest before we pass through certain troubles, and we better not complain like the Israelites did! This is our sanctification after faith in Christ by grace alone justifies us believers. This follows my Sunday Daily Audio Bible from Job 42:2, 6, 12.

Then Job answered the LORD and said: "I know that You can do everything, and that no purpose of Your can be withheld from You. . . . Therefore I abhor myself, and repent in dust and ashes." The complaining stopped and then we read Now the LORD blessed the latter days of Job more than his beginning. 

This is my life, folks, and I am blessed each day and cannot complain like Job first did and the Israelites did.

On the way home from church Kenny calls my cell from the hospital where he has been admitted. He has another septic infection. Kenny has planned a sub for himself--his lovely mother Margaret. I tell hubby when I get home that Kenny is back in the hospital and he is motivated to walk better so we can visit Kenny. Oh I can walk, hubby says. He forgets that he hasn't been walking since last Tuesday and has needed the walker or the wheel chair. Even so, every day he does get better.

Sunday night I put a 7.54 pound pork shoulder blade roast (cost $15 at Winn Dixie) in the the crock pot to cook overnight. 

BBQ Pulled Pork and Soup

Monday, Labor Day

Ask me what my Labor Day was like. The short answer is: We had BBQ and I invited guests. In your dreams. 

Labor Day morning before hubby gets up I pull the pork to make the Southern "pulled pork". The fat is so easy to separate.  I pour an 18 oz. jar of Bull's-Eye BBQ Sauce over the shredded pork and stir. With all the fat I could get out of the liquid in the crock pot I started a soup with two diced tomato cans, older vegetables from the refrigerator including that half onion that had been my downfall when I cut my finger. The soup and the BBQ pork all turned out well. 

Note to self: From now on no movies and eating out. Cook what hubby eats at home. Perhaps this is the new normal. Will he be able to walk and go out? 

That morning hubby tries no knee brace, but is wheeled out to his spot in the den with dog Ziggy in his lap riding along through the long hall. On Labor Day Kenny's mother and our goat farmer neighbor Mary are invited for lunch but both cancel. I made Southern Banana Pudding to accompany the pulled pork I made in the crock pot and planned to cook more vegetables had they come.

There are several attempts by my husband to walk. Oh I can walk he pronounces. In your dreams, I think.

I have to go to Staples in Brandon to pick up a set-aside-for-me toner for my home copy machine that will come in handy for my 4 AM lesson plans for the day. Hubby decides he will go with me. Then he realizes again that he can't walk well and it would even be difficult to get into our SUV. However I do manage to get the Staples Labor Day sale on the toner. As usual I call home along the way to check on hubby.

At dinner time on Labor Day hubby wanted to go out to dinner. In his dreams, I thought, but said "sure" if he could get up and shave. He couldn't, so he settled for dinner at home.

Today-- Tuesday, September 3

I take a day off from my long-term sub job for errands. School can keep and there is a sub for the sub. My errands:

1. Back to the endocrinologist for the official word that my thyroid does not have cancer, but will just need monitoring every four months to see if it grows. Furthermore my carotid artery is clear. I loved the informal comment from this doctor:

Endocrinologist in Brandon

You don't need to take expensive pills forever just because some doctor was taken to lunch by a rep! 

This is so true! I had thought that about the pill Aggrenox which I had been taking twice a day for TIAs for ten years but finally challenged because they are so expensive and I really do not believe I have or have ever had mini-strokes. I just need to remember to keep hydrated with water and not coffee. Today's great blood pressure (121/67) and the clear carotid artery confirm my belief. The doctor pointed out that I would need a neurologist to officially confirm no Aggrenox. (I do not want another doctor appointment, folks.)

2. I meet Pharis at Home Depot to purchase supplies he needs for our roof repair. I also purchase a battery and a belt for the riding lawn mower we gave him in exchange for helping us. I get the 12 months interest-free Home Depot rate through September 4th for all the purchases. (Why I need to do this today.)

3. I go to have my finger prints taken again because I flunked the test after I cut my finger. I get there and find out I was supposed to have an appointment since I had checked to see with my employers (I teach occasional classes for DUI offenders) if I needed one. The finger print place gives me the phone number and I book that appointment for Saturday. Saturday for finger prints will work in my busy schedule.

Pray that Kenny gets out of the hospital soon. As I mentioned responsible Kenny had arranged for his delightful mother Margaret to be there for my husband. She comes over today and cheerfully encourages hubby's morning pills (I hadn't been able to get them down hubby this morning). When I get home from my errands, hubby has been eating the lunch she prepared. It is wonderful to have such neighbors.

Shortly after Margaret left, I take over again, wheeling hubby to the bathroom with dog Ziggy on his lap. Back to lesson plans for the special education substitute assignment. You can bet that hubby will want to go out tonight in his dreams. I am making dinner for us. 

Interview With Our Amazing Volunteer Caregiver

Kenny Sexton lives with his extended family on the property in back of us. That property used to be owned by the first owner of our home, and there are barns and two dwellings there. At one point this property used to have a rodeo as pictured above.  

Various people have rented back there and now Kenny and his extended family live in dwellings (not shown) back there. Even though they are right in back, to get there I would have to jump the fence or drive back there on a dirt road a house away from us. No longer. As I wrote earlier, Wayne has installed a single gate to join the properties.

Kenny Sexton is a younger man on disability who now, despite his disabilities, volunteers to check on my husband while I work, using that gate. I finally had a chance to interview him on his great service to us.

Carol: How and why did you come to take care of my husband?

Kenny: We were talking with each other over the fence and I told you what I had done in the past and volunteered to help you if you needed help.

Carol: I remember thinking that this summer I could introduce you and my husband and see how it went. Never did I realize how soon I would need you. Things went faster than expected and while my husband was in the hospital, Wayne installed the gate making it easier for you to come to the French doors at the back of our property.

Kenny: I realized you needed help right now because he was more confused and you couldn't leave him alone. His doctor wanted to put him in a nursing home and I didn't feel this was the correct decision.

Carol: I didn't know what we were going to do, but was so glad that you were stepping in to volunteer. Tell our readers how you gained the insight into helping Alzheimer's care receivers.

Kenny: There was a time in my life when I ended up in a nursing home and I observed Alzheimer's patients because I lived with them.

Carol: You enable me to leave the home and not worry about my husband because you are checking in on him. You will see that he gets his morning pills and then text me that he has had them.That one Saturday night when hubby would not get off the John, I called you and you came right over and advised me what to do, and helped me get him in the car so I could take him to emergency again. Why do you so willingly give of yourself to be there for us now? 

Kenny: You know, Carol, I feel that God moved us here for a reason and part of the reason is that I get up in the morning so I can serve you all. If I wouldn't be active, I wouldn't get better myself and not be listening to what God has said to me. 

Carol: This is such an incredible blessing to me right now. THANK YOU, LORD! How have you approached working with my husband? Give us an example.

Kenny: I try to be respectful in working with your husband. I don't want him to feel that I am looking down on him. I try to give him his space. One day when I was fixing his lunch, a BBQ sandwich that I warm up and give him along with his yogurt and coconut oil fudge, he said to me, "I could get used to this!" I knew then that he appreciated my checking in on him. 

Carol: Before you came, I would come home and his cold sandwich, yogurt and coconut oil fudge would still be in the refrigerator and he had not had his morning pills. We both have trouble getting him to take his morning pills. How do you do it? 

Kenny: I tell him, If you take your pills, I will go ahead and leave. Then he would take them right away and I would leave out of the back of the house chuckling to myself.

Carol: We learn how to deal with them by trial and error. When I couldn't get him to shave one evening, in disgust I left the house and texted you. Do you remember that evening?

Kenny: I called you and told you that sometimes we have to get out of the situation.

Carol: I was so relieved that you said that. This was still when he was recovering from that nasty UTI infection and I feared we had a worsening of the Alzheimer’s.

Kenny: When do you think you might make the decision to put him in a nursing home.

Carol: I am not ready for that and actually have a fantasy that he can live here all his days. However, as I interviewed Dolores, Latane and Dana on this blog, these fine ladies taught me that it may happen someday. I have seen others in my Alzheimer's Association Support group who were able to care for their care receiver with the help of Hospice. The LORD will be there for me. I am assured of that and try to live each day knowing that the future is in His capable hands. He gives me encouragement along the way, such as a happenstance Christian caregiver right in my backyard!

Kenny: How has having a husband with Alzheimer's enriched your life, or has it been a detriment?

Carol: First, Kenny, even though I am semi-retired and in my 60s it has forced me to grow up in so many ways. Financially, I have to plan. Time management. Simplifying our home which I blog about with The House That Cleans Itself. Taking care of my own health by diet and exercise. I have a thyroid scan next month and now am off of thyroid medicine until that test. I monitor my blood pressure. When hubby was going through his UTI my blood pressure shot up to 144/95. Early this morning it was a wonderful 101/62. Also I value my faith with meditation on God's Word, prayer and disciplined intercession for others.

Kenny: I see that you genuinely care about your husband and struggle with the upkeep of the house but do well. I also see how you bridge the gap with youth with your tales of your rapping when you substitute teach. I think this blog you have been writing may help others as well.

Carol: Thanks so much for letting us interview each other on my notebook computer around the dining room table with hubby watching old movies in the same room. I look forward to the next interview of you on your health issues.

I am now off to substitute teach this afternoon. When I come home, Kenny will have popped over to check on hubby. Thank you LORD, and thank you Kenny!

Hubby in Hospital--Part One

Yesterday morning I picked up Jake and drove Jake and hubby to the Senior Center where they spend Tuesdays. Jake finished his breakfast in the car but hubby still had his breakfast and had not swallowed his pills in the car. With the air of a staff sergeant I brought hubby's breakfast and morning pills into the Senior Center. Later in the day I would attend the 2 pm monthly Alzheimer's Association Support Group at First Baptist and either Sally or I would pick up the husbands.

Sally took care of a sick grandchild yesterday and did not go to the support group. She picked up our husbands about 3 pm. She came to the support group with the grandchild leaving the two husbands in her car and said that my hubby was not himself. He had not taken his pills, not eaten his breakfast nor eaten the Senior Center lunch. He had sat at the center all day. Jake was very concerned as Sally was.

I left the meeting and Sally drove hubby to where our car was parked. It took some coaching to get hubby into our car. When we got home I decided to take him to the front of the house rather than through the garage where with all the junk there and the step up to the family room. I figured easy access to the front door and no step up was the best route to his easy spot by the big screen TV.

However, hubby was not getting out of the car. I feared the worse--a stroke, although he could stick out his tongue. I called his primary care physician's office and proceeded to the emergency room at the hospital where I had gone myself last December in an ambulance.  I could get him there quickly myself without waiting for an ambulance and having to pay some of the ambulance cost that insurance doesn't cover.

After the four plus hours, the emergency room staff ruled out a urinary tract infection or a stroke. I requested  food for him and finally some came about 8:30 PM. He ate only a little--the only food all day. He had some apple sauce and a little bit of turkey, and a taste of jello.

The decision was made to admit him for further observation. I drove home last night so ready to cry. With melatonin from the health food store I was able to get maybe six hours of sleep and I came back to the hospital with this notebook computer where I am typing now and with my iPhone and its charger for contact with people outside the hospital. So glad you can use those devices in the hospital now.

The nurse came in this morning to give hubby his medicine.

Nurse: Give me your name and your date of birth.

Hubby had some trouble with these two instructions. I explained to the nurse that she asked him two questions and he only responds to one idea at a time.

"By law you have to give the date of birth when I give you your medicine," my husband's nurse said.

He was able to give his name and date of birth finally with one question at a time. 


Me to the nurse: What if they have dementia and can't give you their date of birth?

Nurse: I keep going until they can answer something-- maybe they can give the year.

Me: He can't give you that. (He will just cover himself by saying that he doesn't bother with those details because he can check a calendar for the year.)

She proceeded to give him his medicine in apple sauce! I have to try that!

APPLE SAUCE!

The answer for the Pill Pusher me!

In order to be released, my husband needs to see the neurologist. Also, he is really shakey on his feet.



pottery dog, apple sauce



Perhaps hubby is going into a further stage of Alzheimer's. Out of ignorance or bliss I considered my husband in the first stage of Alzheimer's. Stages are different for everyone. Last year a nurse and reporter had contacted me to use hubby as proof of coconut oil. The reporter said I wasn't giving him enough, however, but whatever I have given him I feel has kept him fairly functional for a long time (since December of 2008).

Hubby kept asking: When was the last time we were home? When can I leave this jail? He told the nurse, I have seen you for two weeks. (He has no concept of time now.) I bring a ceramic dog to the hospital and he has this nicknack on his chest, reminding him of our dog.

I am sleepy here at the hospital. Going in search of coffee or caffeine. Thanks for your prayers, folks.

The Pill Pusher and Other Routines

Tuppleware cup with pills now works

We were out late last night. We both forgot our pills last night because we were out to midnight after a wedding and came home tired and the PILL PUSHER (me) forgot to take the pills to the reception and forgot to have us take our pills when we came home.

Pill-taking has been trial and error. Sometimes hubby refuses to take pills if it isn't in the routine that works. He has often forgotten pills in the SUN-SAT pill container even though those are in plain sight. But routine does work with dementia patients.
 
Alzheimer's patients like routine, but not always variety. Hubby's meal routines work for us when I have to leave the house. For breakfast DH has coffee usually or Diet Lipton Green Tea, one Emerald Breakfast on the go! packet, unsweetened applesauce that I put in a little container (I keep several in the frig) and two "ice cubes" of coconut oil fudge I have written about on this blog. His pills come out of a Sun-Sat AM pill box that I put in a little Tuppleware cup on the plate.  Lunch will be on  plate in the frig when I am gone: a sandwich in a baggie, yogurt with blueberries added and crunchies, and two more coconut oil fudge "ice cubes", a lunch that he rarely  needs to warm up because most of the time it is just a sandwich.  I use this pill tupperware cup at dinner for his PM pills as well (just didn't work last night).

This morning I left the house at 6:30 AM for my 7 AM Weight Watcher meeting before assembling my husband's simple breakfast above, letting him sleep in. I thought I would be home in time for us to have breakfast together. Instead I called him to tell him how to put it together so I could go to breakfast after Weight Watchers with two ladies. On the phone I gave him one idea at a time: get the breakfast packet, etc. He was able to do this because this simple breakfast he has many days is part of his routine. He likes to feel he can do things.

He even called my cell this morning  to see how he could feed our dog. He remembered that he is supposed to ask me each morning if I have fed the dog and if The Pill Pusher has had her pills--then he checks these off on his clipboard schedule for the day. Routine is soooo important for Alzheimer's patients.

So in summary on routines:

• Clipboard schedule with activities to check off. Schedule also has phone numbers on it. Husband requested schedule some time ago and it works for us because he knows he has dementia and needs reminders.
• Tuppleware with pills on the breakfast and dinner plate so that Pill Pusher doesn't have to nag.
• Keep items in the same place. Don't change where the cell phone gets plugged in for example!

But oh those cell phones and keys! I am the one that needs to have a routine to check on these things!