Aha Moments in My Caregiving

Not to sound like a braggadocio, but my hubby was great and knew he had a problem. I had to change and learned to take those changes in stride. 

Caregiving.com asked for seven caregiving moments. I actually took the time to read through a lot of this blog. 

One 

Meeting another couple I call “Sally and Jake” (their names on my blog about my husband’s Mixed Dementia) and our doing things together so the Alzheimer’s husbands bonded. Meanwhile Sally and I had support from each other when we did things together. Our husbands went to a senior center together and this would not have happened if they had not first bonded. Jake is not able to go to the senior center without my husband because they used to do this together. 

Two

Using coconut oil that seemed to calm my husband, although it didn’t cure the disease as he passed away June 23 of this year. 

Three

The realization that I was in training since I couldn’t control his disease. I had to change and I often didn’t feel at home in our home because I had to make so many adjustments.

Four

 Handling difficult issues such as driving. I worried and worried. In the end after passing two Alzheimer’s driving tests funded here in Florida, my husband decided on his own that he wished to be a passenger.

Five

 Dealing with Urinary Tract Infections (UTIs) and incontinence.

Six

The medical community not understanding my husband’s not being able to walk. At first they thought it was a torn ligament. Then arthritis. A chiropractor helped until several months before he died. Really, not walking is part of a later stage of the disease.

Seven

The incredible help of Hospice so he could die at home and the amazing help of volunteers such as Kenny and Pharis that enabled me to keep working until several months before he died.

~ ~ ~ ~ ~ ~ ~ 

I am so glad that I decided to keep blogging after my husband was diagnosed. I look back on so much life that we participated in even after that diagnosis. I am so grateful to our LORD for taking me through, even as I grieve now for my husband. 

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

ADAPT!

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. 

Hospice

OH THIS IS SO HARD!  

I AM GRIEVING.

Hospice doesn't just have to be for the last days, but maybe for days like I am having near your loved one's end. Hubby can't walk. Can't get him showered. Incontinence. I solved one very small bed sore with Vaseline, but what if they return?

Every day lately there has been decline.  Yesterday when 2:30 rolled around and hubby was soaked with his own pee and I couldn't get him out of bed, I called Hospice. Matthew from Hospice was here at from 4 pm to 6:30 pm yesterday to interview me and see my husband. He even talked with Kenny on the phone. He qualified and we are enrolled.

Yesterday before Matthew from Hospice came,  I went briefly to town. I stopped at the Plant City Senior Center to sign two forms they had called me about. I cancelled my husband's coming there again today and said for the foreseeable future I couldn't see his coming there. I went to his doctor's office to deliver pee I had saved in the refrigerator in a plastic bag from before he took the antibiotics for the UTI. They wouldn't take it--wrong container. I threw it in the trash.

I texted my pastor and family members and several family have called. My pastor texted me last night that I had done the right thing. Brenda from TN and Sherry from my church emailed me this morning.  Ruby from Australia wrote on the last post. Thanks!

It turns out hubby has a new doctor now--a Hospice physician named Dr. Adria Stephens. Hospice will cover some meds but not all--no more Exelon Patch and Namenda. These preventative medicines weren't effective anyway at his stage. Hubby won't even remember about Hospice coming to the house yesterday afternoon.

Hospice evaluated him at stage 7c. There will be a team of people that come to the house. I look forward to meeting what they call Team Aqua. They will even send a chaplain. A nurse will come every four days. A Hospice aide will bathe him. They will provide him with a hospital bed when I say so and I will buy a single bed so I can sleep by him.

This morning I had to gently let my husband down to the floor in our bathroom because I couldn't get him a few more steps to the wheel chair outside the bathroom. I placed a pillow under his head.  One phone call this morning and I had the fire department that Hospice called help me get hubby to his wheel chair and ready for the day.

I reminisce below about the last times I have had with hubby as I have carefully kept this blog and evaluated my Facebook postings.  

• In December of 2008 when I started this blog my husband was diagnosed with dementia, the umbrella term for many conditions. He was officially diagnosed with Mixed Dementia in October of 2010 and the neurologist was surprised he still dressed himself and the Byrd Institute was surprised I was giving him coconut oil (now they have a study about it). 
• It has only been within the last year that I have been selecting his clothes and doing more of the dressing. Since Thursday when I cancelled substitute teaching, he has been wearing loose jogging pants and T-shirts which he can also wear to bed as PJ's. They have to be changed when he pees through them. 
• Camping has not happened since Memorial Day of 2012. My family provided a respite cruise for me in while hubby went to Virginia to stay with his son also in 2012. We also went to Virginia for Christmas of that year. 
• The last special dates were last month as recorded HERE—April 22 a concert and April 26 a b. d. party for two sibling dogs. 
• The last movie we saw together was "God Is Not Dead" on April 3rd in Lakeland. The last anniversary we celebrated was our 14th when we went to  Carrabba’s Italian Grill Restaurant in Plant City. 
• The last time we went the chiropractor and the last time we went to a restaurant was May 7th--last Wednesday. After the chiropractor, he hobbled into the restaurant and I couldn't see that going to the chiropractor who had been helping him was effective. A lady at the next table at Sony's BBQ told me that there are straps I could get to help me get hubby up from the table--check a medical supply place, she said. Hubby was just starting an antibiotic for a DUI, but walking was not to be. Every day since the walking has declined. He has finished the antibiotic as of this morning. 

She does him good and not evil all the days of her life. 

Proverbs 31:12 

I need Hospice to accomplish that verse. I hope to "do my hubby good", concentrating on what I can do and what he can do, enjoying his smile, humor and our love for each other with more time together than if he were in a nursing home wishing to come home. Already this morning we have told each other we love each other several times. With Hospice I can probably keep hubby home until [gasp] he dies and his soul is immediately with the LORD waiting the resurrection of the body when Christ returns. Hospice is a reminder of grief, but as a Christian I do not grieve without hope. But I am going to cry.