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. 

Check the Manual, Check the Playbook

Several years ago Linda Fisher wrote a post on hearing Coach Broyles and his family. The Coach has a Playbook for Alzheimer's Caregivers.See  http://earlyonset.blogspot.com/2010/04/bring-past-to-presentcoach-broyles.html

That playbook looked like a book I needed to read. Fortunately Karen later sent it to me. Karen's mom passes away from Alzheimer's and this book had helped her. We met when I started writing on her blog and she wrote here.

Playbook. Linda writes that the family treat each repeat question with respect as if it were the first question. Yep, I do that. I let my husband initiate conversations so I don't frustrate him. I prayed last night because it was my turn to pray on even days. Then he asked me to pray again because he forgot that I had. This was my precious time to tell our LORD new praise and requests even though I had prayed several minutes ago. We always hold hands when we pray at night.  I am writing my own playbook on what works with him.

Romans 8:1,9,16,17; Colossians 1:9,24; 2 Corinthians 1:5-7, 9:8; Psalm 41, 31:9-13; Leviticus 19:32; John 14:17, 16:13; Galatians 4:6; 1 Corinthians 3:16, 6:19; 2 Timothy 1:14; and Ephesians 1:17 are some of the verses highlighted in this book.

Here is the poem from Coach Broyles Playbook for Alzheimer’s Caregivers (author unknown)

Do not ask me to remember.

Don't try to make me understand.

Let me rest and know you're with me.

Kiss my cheek and hold my hand.

I'm confused beyond your concept.

I am sad and sick and lost.

All I know is that I need you.

To be with me at all cost.

Do not lose your patience with me.

Do not scold or curse or cry.

I can't help the way I'm acting.

Can't be different 'though I try.

Just remember that I need you.

That the best of me is gone.

Please don't fail to stand beside me.

Love me 'til my life is done.

I will be there, sweetheart!

Reflections on Blogging for Four Years

My first post was 12/31/08. Somehow after four years Plant City Lady and Friends seems to have taken off--over 37,000 hits in four years according to Goggle and over 800 comments in four years.  Now some comments were by me (or NewKidontheBlogg the name I first used), There are 269 published posts and over a dozen waiting to be posted. When we were out-of-town last week, I blogged three times from my overflow of thoughts. Today I have added a new blog feature--a chronology at the top of this blog that I will add to from time to time. At times medical people find this blog and they may be interested in the progression of the disease.

Thank you, LORD, for all you have taken me through as I have reflected and written here and for the friends I have met on the computer who comment here or write books I love:

1. Barb started following this blog in maybe September of 2010. She writes "Cleaning Up the Clutter", a constant theme on this blog. This young mother is maybe 30 years younger than I am and she always tracks what I write. I think of her like a niece, but I can’t for the life of me remember how we met. We both love to write and she has patiently taught me Pinterest and invited me to some of her favorite blogs. One day Barb will be a published author and a syndicated columnist like Marianne Walsh is who also has joined this bog.

2. Marianne does "We Band of Mothers" blog and writes a parenting column for The Chicago Tribune. She always makes me laugh and often with her comments here lately. Her coauthored book, Epic Mom, is fresh off the press.  Recently Marianne asked me if I ever sleep. Yes, Marianne, I do sleep between 6-7 hours each night, and often blog after four hours of sleep. I have drafts I haven't even posted yet, written in the middle of the night. Maybe I should get back to organizing our master bedroom instead of writing, however.

3. Ruby just turned 50. Why am I at age 68 so lucky to have young friends? Ruby also cracks me up with her waiting with "bated breath” to see my housekeeping. Yes, Ruby, it has been two months since I have reported on area #4--the master bedroom. Ruby and I met on a Christian blog and have been following each other ever since. In fact, in 2009 she even wrote the Foreword to my book, Getting Off the Niceness Treadmill. She read every chapter before it went to press. She spells funny (honour) because she lives in Australia. We also play Wordscraper and now Words With Friends on Facebook and she is soooo good at these games, despite her funny spelling. I think we both cheat with sites like http://www.becomeawordgameexpert.com/.

4. I have interviewed caregivers Dolores, LaTane, Laurie. There are several others I also hope to interview--perhaps Dana and Karen who write here. Dana's husband is in his last days (pray). Karen was her late mother's cheerful and wise caregiver and  is now in the caregiving field I believe.

5. Then there are the authors: Joseph Potocny (who has Alzheimer's), and Christian authors Staci Eastin and Mindy Starns Clark who influence my de-cluttering journey. Linda Born wrote My Mom Has Alzheimer’s and is now about to come out with a novel The Children Are Tender.

6. Living on Less Money is so loyal to this blog and  always challenges me with questions to keep this blog going. I do so want to follow her example of wise frugal living.

Thanks to all of you and there are many others who have posted here including friends from church and even my Alzheimer's Association facilitator. When I know of your needs, I pray for them. When I don't know, I also pray for you. I pray every Friday for social media friends--much stronger bond than many Facebook friends we all have.

Happy New Year, everyone!

For Dolores, Special Plant City Friend from Texas

My blogging friend from Texas who has written on Plant City Lady and Friends, is going through rough times now with her David in a nursing home and not recognizing her. She is lonely.

I have been a widow and grieve with her as she begins the process of grieving while her husband is still alive. She likes large letters so here is what I wrote in a comment on her blog and am reposting here:

Dolores,

Your blog is such good therapy for you and for all of us grieving with you. "Bear one another's burdens," the Scripture says.

I reflect on my grief with my late husband's death twenty some years ago. It was so hard and a counselor helped me through. "Why are you so anxious to replace your husband?" he once asked me when I started dating another widower only four months after my late husband's death. I did heal and learn. It took eight years to remarry a godly, attentive husband, who is still godly and attentive despite his Alhzeimer's.


One session those many years ago, after working through much grief, the counselor said to me, "Get up each morning and pretend you are happy." Pretend? I'm thinking, but I didn't feel happy. Crying out to God and emersing myself in Scripture I did get through that stage and the years to follow. I repainted rooms in the house and forged a new life without a husband. I learned to live singlely.

Years later when the Alzheimer's diagnosis came to my current husband, I thought about the hard times of facing widowhood again.

Enter one lovely DOLORES who taught me to treasure every day with my husband with your comments on my blog. I do treasure every day now, as I pray earnestly for you to be given a "spot of joy" (husband's recent term) each day.

I am so grately for you and your blog, dear Internet blogging friend. I am one of the WHYS for what you are going through.

Hugs and prayers,


Carol

Saga Seventeen

This blog has over 10, 000 hits, according to the site meter. How does this happen? I speculate that the labels I provide at the bottom of the blog gets people here. Or I post on other Alzheimer's blogs and "NewKidontheBlogg" takes people here.

Last Monday I made myself unavailable to substitute teach so we could go to Sally and Jake's church for their monthly senior’s event. Everybody brought a bag lunch and a collectable hobby to share. Sally was in charge and so she had me do my "raps" for the group. Sally shared her antique trays, Jake—his bird houses, and hubby his toy horse collection. I shared four items from my ruby red glass collection.

Usually pills and breakfast will happen after I leave the house, when hubby gets his false teeth in. He needs to eat something when he takes those pills and three days last week he ate breakfast, but no pills while I had to leave to substitute teach, which I did Tuesday through Friday. Saturday when I was off to teach a first-time driver’s class, I had a plan for those pills. Put them on the plate with his breakfast, because putting the pill box by his breakfast doesn’t cut it. Great solution.

Alzheimer’s patients need socialization and hubby loves to get out. Wednesday night we went to Toastmasters, the club that I helped form at a church in Lakeland. I tend to talk too much there—go over my time limit, but when DH is called on for “Table Topics” at Toastmasters his verbal skills are excellent--often humorous and to the point for this extemporaneous response.

But are his verbal skills really excellent? I love his prayers, but I realize that he now uses limited vocabulary and concepts when he prays at night. He thanks God for the "good" day and goes on about the "good" day, without specifics of what happened, for maybe four or five sentences.

He can ask me questions successfully (many times it is the same question up to six times), but he cannot respond to my queries. For example, I spilled milk on the dining room carpet and wanted him to bring me towels quickly.

“What kind?” he wants to know. “Paper towels?”

“No. Hurry and get towels out of the basket on the pink trunk in our bedroom.” That was TMI (too much information) for him. I ended up getting the towels and as it was Sunday morning and we had to leave for church, I wouldn’t be able to clean that carpet.

What about his reading skills? He doesn’t always like to read the daily clipboard schedule I make for him. He has another pad that he writes on to supplement that daily schedule. He will then cross of the item after it has happened. He reads the bulletin and hymns in church, but doesn’t read so much during the week. There came a time when Dolores’s husband stopped reading—something he dearly loved to do. Hubby loves to watch videos and so far that is what he does while I am off supplementing our income to try to pay for my dental work and get our credit cards paid off for when I have to stay home full time as Dolores and Sue have had to do.

Social Sunday Night. We get home from church activities about 4:30 and get ready for guests to come at 7 PM for another pool night at our home. I am glad the carpet doesn't smell from the spilled milk--yet. Three gentlemen and Sally and Jake's delightful ten year old granddaughter play pool while we wives play Mexican Dominos. The granddaughter starts enjoying our dog Ziggy, who also liked the attention and decides pool is more interesting than her Math computer game. DH and Jake sit in the family to watch TV while Bob goes to the den ready to play pool. Now hubby doesn’t realize as a host he needs to be playing pool. I remind him and like Archie Bunker in the old TV comedy, hubby shushes me up. About five minutes later the two Alzheimer’s husbands join Bob in the den where the granddaughter has fun playing with three old men.

“Lana,” I quip as we ladies play our domino game, “do you realize your granddaughter is learning to enjoy playing pool with men?” We ladies laugh.

It is so great that our two husbands are taking turns playing with two others who keep track of the game. Good week, but verbal skills are declining I realize.

The Sovereign LORD has given me his words of wisdom,

so that I know how to comfort the weary.

Morning by morning he wakens me and opens my understanding to his will.

from my devotions this morning--Isaiah 50:4 NLT

Second Book Report--Early Onset Blog Books

Five years ago Linda Fisher's husband died from Early Onset Alzheimer's. While my husband doesn't have that form of dementia, I learned a lot reading Linda's books, really a compilation of her blog. There is also a link to her blog here. When her late husband developed Early Onset, Linda began doing two things: 1) she became an advocate for more funding for the Alzheimer's Association; and 2) she began writing for therapy. Why she even wrote a book on therapeutic writing called Rocks and Pebbles and edited a book of true stores called  Alzheimer's Anthology of Unconditional Love: The 110,000 Missourians with Alzheimer's.

She described her caregiver process as watching her husband Jim die one ability at a time--unlearning. How I identify. First in 2008 my husband wanted to get rid of his extensive theological library--we gave books away and also sold some. He lost interest in the computer (maybe he has been on his computer five or six times in the past year). No longer does he want to work in his workshop and he has sold a lot of his shop machinery to friends. He gardens, vacuums, cleans the carpet and watches TV now and really enjoys this retirement. Probably many women would be happy if their husbands did all of that and they knew where they were at all times like I do!

Linda noted that the caregiver learns a new level of love, not expecting reciprocation. However, every day my husband says he loves me and he trusts me to make decisions. Because others don't live with the problem day to day, they are not aware of his diminishing capacities and there will come a time when I will need to ask for help from others.This week we will celebrate ten years of marriage. I have in the last three years taken on new responsibilities such as finances--scary since we have less income than when we both worked full-time. He trusts me and the responsibility is overwhelming at times. He used to handle repairs and now I have to do that. Call the plumber he says and I have to figure out on his Outlook whom we use.  Every day I am conscious of his disabilities and my inabilities for the challenges.                                                

Linda writes in her second book: Some of us are survivors and expect to continue moving forward with our lives. Others feel like victims and expect more catastrophes in their future. (pp. 16, 17) Money can't buy love or good health, but the lack of it can make life tougher. Either accept the challenge to make it through the tough times and still enjoy life, or decide you can't and sink into despair. (p. 26) What is your caregiving goal? I will venture a guess that it is to take the best care you can of your loved one. You don't care about being the world's best caregiver, or plan on being a professional. Let's face it, when you become a caregiver, you can't spend years practicing before you know what you are doing. You learn to be quick, think on your feet and be creative. (p. 68)

Linda writes also in this second volume that life should never be in a holding pattern waiting for a season to change. Living life in dread of the next season, and what it may bring, can steal our joy. I believe joy delayed is joy lost. The important thing is to embrace today and celebrate the festivals of the current season. (p. 132)

Linda, thanks for publishing these two books taken from your blog. I feel like we had biscuits, gravy and coffee together (her favorite meal) and I feel like I have a new friend with your well-written books.