Tuesday, May 20, 2014

What's Been Working, Part Two

Alzheimer's Is a Long Road With Twists and Turns
What was working HERE two months ago at the end of March, isn't working now. More help is needed and we have it except for times I have to be gone and Kenny isn't available. We have been on board with Hospice now for one week. As Laurie, west coast caregiver whom I have also interviewed said in a March comment, you have to


Laurie's husband is at home rather than in a nursing home--I keep learning from her even since our interview in the fall of 2012 HERE.

Adapting to NO showers. Before Hospice when I couldn't get hubby in the shower and volunteer Kenny was out of town, I used washcloths and Simply Right Adult Washcloths to clean my husband. These disposable washcloths have Vitamin E, Aloe and Chamomile to aid skin wellness (maybe prevent bed sores). I settled on Simply Right Underwear for Men for only $.41 per use as I recorded in a comment HERE. Brenda recommended those Simply Right Underpads for under the sheets and also an ear thermometer for checking UTI infections.  (All Simply Right products are at Sam's.)  I purchased an Instant Ear Digital Thermometer from Walgreens where I also got the UTI strips I wrote about HERE. With the thermometer two points above normal and you have a UTI.

Sam's and Walgreens need to hire
me to do a commercial for them. 

From now on Hospice will be providing these materials. With a bed bath five days a week from Hospice and that cranberry juice, perhaps hubby will not get UTIs easily.

Avoiding falls. Hospice provided a walking belt called a Universal Gait Belt. This was possibly what the lady at the restaurant thought I should use recently. You wrap the belt around your loved one and tighten with two fingers in it so you allow for adequate circulation when you secure him/her. Then you don't grab an arm and pull him/her by the midsection. As yet, I haven't had an occasion to use this belt.

New uses for equipment. Last summer when hubby was released from the hospital, he was sent home with a wheel chair and a walker. His walking improved and he didn't always need those. I had just been using the wheel chair and grab bars in the master bathroom. Now I put the half-opened walker in the master bath and I avoid a fall in there like the one when the firemen had to rescue him.

Walker and grab bar help hubby get to toilet. 

Cognitive changes. He asks about the second story and if this is his home often. No, Sweetheart we do not have a second story, and yes,  this is our home. I assure him we are home, but tell him he doesn't walk well and needs someone with him so he doesn't fall. When I took him driving on Sunday he had strange perceptions about the neighborhood. I just listened, but did not argue. He wanted to know the name of someone. I kept throwing out names I made up and finally he decided on a fictitious name he thought was someone from his past. Hubby wants explanations for how the wheel chair works and even how the bottled water works. I am an English teacher--not a scientist--so I come up with something easy to say. He can't accept long sentences anyway. He will often say you are not making sense. Kenny surprised us at our front door Saturday afternoon. He was back in town. An hour later hubby didn't remember that Kenny had been here.

Pills in applesauce.  I crush his pills and put them in applesauce and hand feed him so he gets his pills. I learned to not put cinnamon in it as he vomited that up. I tell him he has to have all the applesauce because the pills are there. The applesauce I use is naturally sweetened and it works sans cinnamon.  

Hospice doesn't do weekends and hubby is noticing changes and he rebelled and wanted to stay in bed in his pee on Saturday.  I stayed calm. In the early afternoon he was shivering and I could  finally convince him we needed to change his clothes. It had been so pleasant W, TH, and F to have a home health aide change his clothes and the wet bed. On weekends I do it all. By Sunday night May 18th I was a wreck and Monday morning was hard too before Hospice came.  

Earlier in the week our yard/maintenance man Pharis and his wife got our king-sized bed out of the bedroom and brought in my new twin bed that would be by his hospital bed.  The hospital bed was finally delivered May 20th. While waiting for that bed to be delivered, hubby has been sleeping in my new twin bed.  I have been sleeping on the family room couch and my back hurt from that couch and from helping hubby get around. I do not sleep well as I keep checking on him.  Sunday morning I left him alone in my twin bed soaked with pee because he was again grumpy. Don't worry--I am using those Simply Right Underpads when he sleeps on my  new bed. 

About an hour later he didn't remember being grumpy so we could start the day over.  I came back and said, “Good morning, sweetheart! Today is the day we go to church." Since he walks a little better I was able to get his wet disposable underwear off and bring him in the wheel chair to the master bathroom where he sat on the commode. I somewhat cleaned him and dressed him for our 2 pm church service and got him out by his Archie Bunker spot in the family room sitting in his wheel chair. A sign in front of him reads: 

Walk with someone by your side! 

That’s what we all have to do. Have someone by our side. Now with the new hospital bed and my twin bed, I can get off the couch and sleep by my husband's side tonight in a comfortable bed and he will not pee in my bed.
Ziggy likes the Geri Chair Recliner

Ziggy has claimed the Geri Chair recliner, but I can't get hubby in it yet.

The bed and the recliner are loaned to us by Hospice and clients have this furniture until no longer needed. Ziggy will have to adapt going between the hospital bed and my twin bed tonight. But you can teach him new tricks.

Thanks ever so much for your 
prayers and interest, folks. 

Hospital bed at left and my twin at right
are covered by a bedspread. 


  1. We've been with hospice for a year now and they are wonderful. Some of their equipment I don't much care for. Mom has a nice lift chair that Don bought her from Badcocks, and he just bought her a Temperpedic mattress that fits in the hospital bed provided by Hospice. The mattress that comes with it totally suck. No firmness to it AT ALL. And it has made it much easier to deal with her in her bed. Hospice provides us with diapers and chucks. But I still put Depends on her because they are more absorbent.

    1. You are such a doll, Davina, to be there for your mother-in-law. Does she complain about the mattress? Is that how you changed? Tonight is hubby's first night in the Hospice hospital bed and my first night getting to sleep in the new twin bed. Ziggy is still adjusting, but the bedspread will keep him from slipping between the cracks!

  2. That is sweet with the hospital bed and twin bed so you guys can still be close when sleeping! I do think it has been good with the changes that have occurred with hospice's involvement. I'm sorry though that they aren't available on the weekends, but at least during the week you get a break from some of the stuff that you have to do with care giving. Glad to see that Kenny is home; I hope his mom is doing as good as she can be doing. Good idea to crush the pills and put them in applesauce!


    1. Yes I like it and we have a nice big room to make it work. I also moved a cart from the dining area into the bedroom so that the aide has more room for her bathing and dressing of my husband. Back to bed!

  3. Carol, We found that crushing the pills and putting it in yogurt worked well too. As they progress, swallowing becomes harder, speech becomes slurred, and getting them up becomes more difficult. I found we were constantly adjusting and when I thought I was getting a grip, things changed again. Some days it seems as though every minute is something new, because they just don't know what happened 30 seconds earlier. When Charlotte was really struggling emotionally, I would say, "I'm going to read you a story. Just sit and listen." I would then read passages of Scripture to her, and it would calm her down. I'd also brush her hair, massage her head, and put lotion on her feet. All of those things seemed to help her. I normally used a lotion with lavender in it, because that's supposed to help calm people. I found that the adult diapers with Velcro were easier to work with, except when we were out in public. I needed something I could grab a hold of when moving her from the wheel chair to the toilet. I remember the days of being exhausted, and she was in a nursing home. I wish I lived closer to you, so I could help you. You're very much in my prayers, as well as your sweet husband.

    1. Such great advice, Mindy. Also thanks for your prayers.

  4. Hi Carol
    The beds look cozy and nice together. Hard to tell they are separate beds. We had one big King comforter for a long time, then I finally went to two matching twin comforters, because there are occasions I need to put up the inside rail or get between the beds to change or position him. But it still looks nice. I think my photo shows it that way. You're doing a good job adjusting, and will learn what works and what doesn't for your situation. It takes time, and a resourceful care giver. That you ARE! Blessings and hugs, Laurie

    1. Now I find I have to go get more twin sheets! It was fine when I was sleeping on the couch, but now we need more twin sheets I can use the top sheets from other sizes. I bought black fitted sheets because they wouldn't show stains. The home health care aide took mine and I am washing the others. This will work until I can go buy more. May call you later.

  5. Wonderful people commented on my Facebook page throughput the day when I put out one of those horrible woe is me cries. Then, how cool is this! Three Hospice personnel came over late afternoon.

    The nurse checked on hubby and thought he was great and advised me to not expect that he has an appetite.

    The social worker listened to my need for respite when I teach this summer and Kenny is gone.

    The chaplain prayed with us. That chaplain had heard about my rapping so I had to spit some for him; now Rev. Mc can freestyle so he did a rap on the spot about the meeting on our front porch.

    They met Kenny also.

    What started out as a hard day was met with wonderful surprises. With Hospice and the LORD I can do this!

  6. I think Sam's and Walgreen's needs to hire you, too. :-) Your life is full of changes right now. I'm thankful you have a good support group my friend! I'm learning so much from your journey. The grace God is giving you is inspiring. Your husband is blessed to have you!

    1. Last night it was NO from my husband. No (little) food, no pills, not getting up from the Geri chair to go to bed. Finally at 10:30 I had two neighbors (men relatives of Kenny) lift him into bed.

      Applesauce for pills wasn't working. Pills in yogurt suggested by the nurse wasn't working.

      Georgene--I need more of that grace.

  7. Dread going into the weekend now. Hospice will come out Memorial Day. Have someone to be with hubby Sat. while I teach a class for first-time drivers.