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. 

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. 

Beginning of Stage Six

Even in laughter the 

heart may sorrow,

And the end of mirth 

may be grief.

Proverbs 14:13

I started noticing changes lately. Those outings we had in April, may be the last ones we have and that thought was in the back of my mind when we went to a show and to a party. Some of our usual routines are not working. I am showing signs of being stressed out by change (not sleeping as well) and hubby is definitely changing. It may not just be a UTI--my idea earlier in the week.  Rather hubby may be headed into stage 6 of dementia. Oh my goodness! I did not want this to happen. I am trying to have a normal week. 

Enroe from my church helped me on Tuesday, his day off and my day off from substituting. After I dropped off the GMC to have the air bag replaced for free because it was recalled, Enroe  drove me around all morning in his vehicle. We went to Social Security so I could order a replacement SS Card. We went to my husband's doctor's office to get a prescription for his suspected UTI, and we went to one bank. Then Enroe drove me to a Christian Women's Club lunch where I sat with my friend Sally. Ordinarily both of our husbands would be at the Senior Center, but my husband was in no shape to go. Jake has been at the Senior Center enough with my husband so Sally can leave him without a problem. Then Sally drove me to a bank and then to get my car. I went on to Lakeland Toyota to find out about a gap refund since I have refinanced the GMC. Ordinarily Kenny would drive me on such errands, but he is out of town. Tuesday I had to do it all and Tuesday night it was so hard to deal with hubby! 

With Kenny gone, I have been fixing hubby a peanut butter and jelly sandwich on a croissant for lunch when I work. He loves it. My plan has been to not substitute on Tuesdays this May. I told myself it's just a UTI and he will get better. 

What do they say about the best laid plans!!!

Wednesday morning I woke up ready to give hubby his pills, get him dressed and wheel him in his wheel chair out by the TV. No way did this work as it usually does and I had to call the school to say I would be late. I just could not hurry hubby up. He had only had his second antibiotic pill for the UTI. To top off everything, the sheets and mattress pad were wet!  I decided to not substitute for a few days, maybe until Kenny is back in town. Yes, we need the money, but the LORD has always provided and He can do it again. 

What is happening? 

1. I have to stop my busyness because we may be going into stage 6 of Alzheimer's which is described HERE. I cannot keep up my pace. 
2. We are using a wheel chair and a walker. Last year hubby would have objected. Recently this is the way he is getting around and he is accepting it. The chiropractor can only do so much to restore his ability to walk now. He hobbles. This is stage six, folks. 
3. Urinary incontinence is here. At first hubby did not like these briefs. I wanted to mail back the adult diapers to Rite-Aid and waited for directions for that mailing that never came. Now I can use them at night and will try them tonight. This is stage six, folks. 
4. I AM BLIND! I can no longer be THAT blind to blame his behavior ALL on a UTI. 

Before I confirm stage six, which is highly suspect, I will see someone at the Alzheimer's Association tomorrow morning. We will see a neurologist in June, if not before so we can see if the Exelon Patch and Namenda will still need to be taken. What other meds does he need? I wonder.  

Sad update:  Kenny's mom, Margaret, has stage four cancer. She is in Orlando recovering from surgery that may not have gotten all the cancer. She will have chemo. Kenny told me she asked about me. She has been such a wonderful friend and fine Christian believer. I would choose her as a sister any day if I could. Her recovery is not guaranteed, but we have talked about our guaranteed future in heaven with our LORD. 

I am just not ready for all of this! 

Carol

Tripped Up by Nouns; Another UTI

If you don't know what a noun is, see this link HERE. Or just click on here because it is fun.

I read that the nouns are the first to go with Alzheimer's patients. Now my husband's nouns, or names for things, are leaving his vocabulary. For example, when he was not walking, he asked me to write "urinal" on that thing he called a "pee jar". When I ask him to put his seat belt on in the car, it pushes the door button down. He doesn't understand the word underpants.

Tuesday he didn't understand get in the car in the garage. I came in the front door from turning off a light on the front porch and he thought that garage was out the front door. He lost his balance and fell on his right side--the side with that knee he had been having trouble with. He was tripped up by the noun "garage". He said he was fine. He sat Indian fashion on the rug. I told hubby to just sit and I would go get help to get him up from the carpet.

At the chiropractor's office

Tuesday is the day the husbands go to the Senior Center and I took a turn to take Jake and hubby to the Senior Center so that Sally could get to her appointments.  I went to get Jake at his house, a mile and a half away. Back at our house DH would not let me help him get up--Jake was ok. I called Kenny and he came over and Kenny and Jake got hubby up just in time for his 9:30 chiropractic appointment. Dr. R. said that I got him here in time to help with that problem knee. He is able to walk. But more is going on.

We happened to be at the chiropractor's office for quite some time after Dr. R. gave hubby his treatment. Kenny doesn't give hubby his pills on Tuesdays and in order to get to the appointment in time, we took the pills with us.   It was patient appreciation week and they had fruit, rolls, coffee, etc. Jake and I waited and waited in the chiropractor's office for hubby to take his pills.  Finally Donna in the office there came over and coached hubby in taking his pills and we were able to leave at 11:15. I dropped Jake and hubby off at the Plant City Senior Center, hubby going in with his walker.

Sally and I went to our monthly Tuesday Alzheimer's Association support group at First Baptist at 2 pm and then we both picked up our husbands at about 3:30.

When we got home, hubby was walking fairly well thanks to the chiropractor. However,  I knew we were in trouble. Hubby headed for the bedroom and laid down. I gave hubby his coconut oil chocolate in bed and it took until 7 pm for me to coax hubby into coming to the family room for his dinner. I think that coconut oil helped revive him.

We have been fighting some infections recently. I had an upper respiratory infection a month ago and hubby had bronchitis. But with antibiotics we were both over those illnesses. Kenny suspected a UTI on Saturday and Tuesday with all the behavior I also suspected another UTI, as hubby was not drinking enough liquid lately and he was not himself. Yesterday's stubbornness was one precursor of the UTI. Confusion also is an indication, although you don't know if it is just an Alzheimer's patient continuing to go down hill. He started to put his underpants over his head yesterday morning, obviously confused.

I was able at 4 am this morning to have hubby pee in his pee jar or urinal. I put a UTI test strip into that pee and it registered positive. I canceled my substitute job for the day so we could go to the doctor for medicine. I put that pee jar into the refrigerator to bring to the doctor. Kenny was on his volunteer duty and he came over to take meds with hubby.

The test strips and the pee jar certainly helped. The doctor's office will test the pee, but in the meanwhile did give him that same prescription he had last time. Will report back to you how he does.

More Baths and Less Talk

Disclaimer: This is not a book review about a very funny book where UK author Nick Hornby rattles on and on about the books he buys each month, but then reviews the books he actually reads each month.  

However, the title of the book has everything to do with the topic of this post.

At the end of August our lives were thrown upside down when my husband couldn't walk. You add a disability to Alzheimer's and life indeed is complicated and my stress and ability to cope with life is hammered. When I showed neighbor/caregiver Kenny the title of this book, we both laughed. Kenny has been helping me with my husband's showers and today's shave and shower was the most successful to date. Hubby needs more baths and I need less talk. It's all about the wife nag factor. I know he needs more baths and cranberry juice to avoid another UTI, but I need to shut my mouth about this fact. 

This morning Kenny skillfully suggested that hubby sit on the toilet while he gave him a razor shave. The idea was that hubby is already in the room where he showers. 

Now I was outside enjoying Pharis and his daughter Dezarae landscaping in Area 8 of my project, The House That Cleans Itself. When I left you HERE last May, one of the plants in the front yard was dying. Those were removed and new croton plants have come to our front door, mainly purchased from a country neighbor about two miles away. Stephanie sells wonderful plants cheaply and gives more help than Home Depot. 

Huge Landscaping Improvements Being Undertaken

Pharis has many plans to save this the yard and improve the house, including the roof. How blessed are we!

Meanwhile I popped back inside and Kenny had gotten hubby in the shower without me! 

I said something when I saw this and my husband snapped back. I should have left them alone--not said anything like the book title suggests:

MORE BATHS AND LESS TALKING

In the midst of many hard days, today is so encouraging. Thank you, LORD, for people coming alongside this journey. 

Thankful Thursday

I have seen others post a "Thankful Thursday" post and I have sooooo much to write and I have sooooo much to be thankful for that I am bursting.

First of all I think of the Scripture from James 1:2-5 Count it all joy when you fall into various trials knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing.  If any of you lacks wisdom, let him ask of God, who gives to all liberally and without reproach, and it will be given to him. 

I am thankful for:

1. The frog that I was able to capture and put outside this morning. It was on the kitchen floor early this morning, probably was weakened from its time inside. A towel thrown over it and it's captured and it was taken to the back yard.

2. Home Team Pest Control who sprayed a Yellow Jackets nest this morning--the best time of the day to get them. They also took care of a  wasp nest. We thought they were Guinea Wasps in an earlier post on this blog, but the pest control technician took a sample to check what insect it is--most likely Yellow Jackets, but they will confirm. These critters had stung Pharis earlier and Pharis had told me Monday night that these insects were still around.

Insect Nest Disabled This Morning

2. That Pharis mowed and trimmed Monday. Great job!

3. That I have the day off today, Thursday,  to be home with my husband.  I booked myself unavailable to substitute for two days this week--Tuesday and Thursday. Getting over a cold here and teaching a class for DUI offenders on Saturday. I need time for him and for me.

3. That Kenny could go in the car with DH and me Tuesday because the wheel chair is too heavy for me to put into our SUV.  I was so thankful I didn't have to substitute on Tuesday because the regular teacher was scheduled to return! Two appointments, lunch and getting that handicapped parking sticker. Kenny helped DH get into our high SUV and put the wheel chair he had been confined to in the back.

4. Thanks for Walgreens and appointments. My husband has been getting cranberry juice to help prevent the dreaded UTI, but once a senior citizen gets a UTI, they can get another one. Treat it early, they say. Monday night I bought the pictured kit from Walgreens to test it out on hubby since both Kenny and I saw a sudden difference in my husband a week ago today that I also blogged about Saturday.  For more information on UTIs see HERE. Monday night I used a strip with my husband's urine as well as Tuesday morning. Sure enough it looked like there was an infection starting from the strip results. I could take hubby (also called DH for dear hubby) to two appointments I booked suddenly for Tuesday.

5. First appointment at Markley Chiropractic in Plant City. These magnificent chiropractors helped us after our crash in December of 2010. Will the chiropractor help with hubby's walking? It was so difficult to get DH into the Expedition Tuesday morning, but Kenny carefully coached DH in how to do it and then helped him get into the chiropractor's office.  Dr. Robyn  had seen hubby about his knee before recent hospitalizations. I explained to Dr. Robyn all about the hospital trips and that the X-rays just showed torn cartilage and arthritis. Over the counter and then prescribed medicine for pain wasn't helping him walk, and in fact DH was becoming more wheel chair dependent. The hospital report hadn't been faxed over, but she took our word for it and performed wonders on his twisted knee and back. Right after that appointment his getting in the SUV was easier. DH will continue appointments with her.

Kenny and DH while
Dr. Robyn fixes the back

"Why didn't the hospital find all this out?" I asked her.

"It's like apples and oranges," Dr. Robyn  replied. (There is the medical community and then there are chiropractors is how I interpreted her apples and oranges statement.) 

No more rides for dog Ziggy in the wheel chair! Hubby is using the walker and may not need it soon.

6. Second appointment. We went the primary care office where my husband's doctor was off, but my own doctor saw us to get an antibiotic (Ciprofloxacin HCL 500 MG twice a day) for the UTI. Fortunately she listened to all the symptoms that Kenny and I gave her and saw the Walgreen strips. They would send their own sample of his urine to a lab for tests. By the way I had brought the urine sample to the doctor because I wasn't sure that DH could provide a sample on the spot and he didn't. Note for future: refrigerate any samples you bring in.

6. A handicapped decal for parking. Last week my husband's doctor had signed the paper for privileged parking. When we went to get it Tuesday it was free, despite the government shutdown!

Yesterday, Wednesday, I went back to the school where I have been teaching in a special education classroom. I was scheduled to teach for another teacher, but that special education teacher had not returned from her leave and was going on a year's leave and I was put back in the class that I had said good bye to on Monday and others covered the class I had been scheduled to teach. A gentleman had been offered the job in special education and I was happy for them and happy I was put in there for the day.

After the students were on the bus yesterday,  I was told to wait for an administrator. That gentleman had accepted another teaching position. Could I take a long term job in this class for the rest of the school year, of course taking off on days I needed to be gone? I do love these thirteen students and the paraprofessional I would work with.  I need to call today with my answer.  Pray for the decision which I need to make today. Apparently there are not enough special education teachers around and my years of teaching all grades except fourth grade will come in handy. I do not have training in special education, however. This will postpone my working on the dissertation, but can answer some financial considerations such as paying off credit cards so I can stay home full-time with hubby in a year should the need arise. And less gas because the school is closer than other schools where I substitute! Both DH and Kenny thought it would be great to have me do this.  Kenny prayed about this with us last night. DH and I prayed this morning. Stay tuned. Pray for wisdom that is promised in that James verse above.