Caregiving the Final Year

I had discussed the options of nursing home care and in-home Hospice care with a counselor at the Alzheimer's Association. I decided on Hospice. My husband could stay at home and since I could resign from my jobs substituting in public schools it was THE solution, rather than a nursing home. It was most comforting to have hubby at our home, as his decline was very rapid as chronicled on this blog.

NOT WALKING. A year ago hubby woke up not being able to walk. He hadn't fallen and I thought it was that arthritis and not a broken leg. A knee brace had been used for a time.  However, in hindsight, his not walking was all about dementia and the plaques and tangles taking over another part of the brain. Our chiropractor gave him increased mobility, but in the end that part of his brain that enabled walking didn't work.

I realize that not everyone is able to keep the loved one at home, but someone has to live with them.  Some dementia patients are difficult to handle because they are angry and their filters for normal social behavior are missing.  Or some wander away from home.  Some turn the stove on and forget they did that and risk burning the house down. My husband didn't cook in the past few years and didn't wander. My husband relished being "normal" and I treated him normally as my loving husband, learning to talk simply to him and always saying "I love you" at least once a day. It worked for us. He had a good disposition and just loved watching TV and enjoying his DVD collection. We both loved our home. I would keep busy, but not really concentrate on the TV he was watching.

Hubby in hospital bed at left;
dog Ziggy on my twin bed. 

HOSPICE decision. We took out the king-sized bed in the master bedroom, the Hospice hospital bed was moved in and I slept by hubby in a twin bed pictured. Our dog Ziggy moved between our beds. I learned from Hospice that hospital gowns at home are made by cutting the back of a T-shirt up the middle but not through the top ribbing so they would stay on; this made it easy to change their top. By this time my husband was bedridden and using adult diapers.

Handy dining room cart moved to bedroom

TV, bomb box and cart for supplies

Hospice needs a station to do their work. I used a cart from the dining area and moved it to our bedroom. The "Depends" type products were stored on a chest nearby. Near the end of Hospice, a Home Health Care Aid came every day and I actually learned to change my husband's diapers and he never got a rash. The nurse who came when he died noted that he had been well cared for. He was loved and made to feel normal.

My dear husband knew he was dying and told Kenny he was ready to stay in bed -- he had had enough of moving from the Geri chair to the bed. He would tell Kenny things that he didn't tell me, because he needed to feel normal around me I think. Kenny was his buddy--not a volunteer caregiver in my husband's mind.

I believe that Hospice in the home is a great way to take care of our loved ones. They are most comfortable at home. Look at this wheel with all the services Hospice provides.

Support groups and other help. An Alzheimer's Association support group is most helpful. We caregivers need support. We HAVE to get respite. People were always with my husband when Hospice was called in. I went to the grocery store when the Home Health Care Aid came, and went to church when someone was here. For months I had been contracted to teach three classes and someone was with my hubby for many hours those three days. I had to ask for that help from friends.

When hubby went downhill I started taking 10 MG of the antidepressant Paxil that I will get weaned off of hopefully when I see my doctor in September. I tried to stop because it is non-habit forming, but that was a mistake and I needed them to maintain my hormone levels and an acceptable mood. Then l read where you need to get off Paxil slowly. I have had two counseling sessions--one with the Alzheimer's Association and one with Hospice. Neither of these appointments cost me a dime. Both counselors also advised me to taper off of Paxil slowly.

TAKING CARE OF ME.  Many caregivers pass away before their loved one dies because of the stress perhaps--maybe 60% I have read somewhere. The grief added to years of caregiving can take a heavy toll. I am finally taking care of me. I went to the dentist this week and before my hubby died I had someone at the house so I could keep my mammogram appointment that had been scheduled for a long time. I am going to Weight Watchers again--glad that I didn't gain all the weight back that I lost in 2012. I think some of my gaining back weight was that ice cream that hubby and I enjoyed together--one of the last things he would eat. I have not had ice cream since he died--it would cause a grief burst to have ice cream.

I am both relieved and grieving and need more sleep--even dog Ziggy needs more sleep.  I am trying to get out and about and do things that bring joy to my life. I am discovering what works for me, glad that I can still do things.

I am going to a grief support group. Hospice has them, but I am going to a thirteen-week grief group with my friend Sally at her church. We are using Grief Share: Your Journey From Mourning to Joy, published by Church Initiative, P. O. Box 1739, Wake Forest, NC 27588. It has a manual with homework and also a video that the facilitators play in class. Tonight is my second session.

Today I go vote and I am less prepared to vote than I have been in the past. I started to watch the Emmy's last night and realized that I did not know these TV programs up for nomination.

THIS BLOG WILL CONTINUE.  Stay tuned. I am writing a seminary counseling dissertation on dementia caregiving and then finding a publisher for the popular version of that manuscript.

You have turned my mourning into joyful dancing.

You have taken away my clothes of mourning 

and clothed me with joy,

that I might sing praises to you 

and not be silent.

O LORD my God,

I will give you thanks forever. 

Psalm 30:11-12 New Living Translation

At This Stage Status Report

I mention short-term memory and my husband quips Who are you?

Here are some other things he says:

I think I asked you this before.

Carol? (I say yes.) Just wondering if you are kicking and breathing. (I show him I can kick. I show him I can breathe and he laughs.)

I go walking in the neighborhood with a neighbor lady and when I return he says. I forgot where you went.

Today he both acknowledged memory loss and accused me of not telling him something I know I told him.

Other news:

DH and "Jake" went to breakfast with "Sally" and me today. Then we did it! We took our husbands to the Plant City Senior Center. We went in with them and left. Sally picked them both up at 2:30. I had errands to do and in the process found a $25 file that looks like a chest to put in the master bedroom, the current room I am processing as I follow The House That Cleans Itself. This two drawer file will mean that all these boxes, bins and baskets I "hid" in the master bedroom can go.


Dog Ziggy at the bottom of mess.

Why ever did I think those baskets would work?

Great Solution

Two neighbor men helped take this file into the master bedroom. It looks like it could be bedroom furniture, but is really a file inside.  The bookcase and file will be a great asset as I finish up my counseling studies.

Many things need to be finished in this master bedroom, but I can see the light at the end of the tunnel now. I may need to jump ahead to area #5 now, the living room, because Christmas is coming.

An Email Story and National Make a Difference Day

Today is Oct. 27th National "Make a Difference Day".  I posted that fact on the Alzheimer's section group board on Pinterest.

Sally sent me the following e-mail story about an angel (dog) and a grouchy father. Get ready to cry and think about what you can do today.

"Watch out! You nearly broad sided that car!" My father yelled at me. "Can't you do anything right?"

Those words hurt worse than blows. I turned my head toward the elderly man in the seat beside me, daring me to challenge him. A lump rose in my throat as I averted my eyes. I wasn't prepared for another battle.

"I saw the car, Dad. Please don't yell at me when I'm driving.My voice was measured and steady, sounding far calmer than I really felt.

Dad glared at me, then turned away and settled back. At home I left Dad in front of the television and went outside to collect my thoughts. Dark, heavy clouds hung in the air with a promise of rain. The rumble of distant thunder seemed to echo my inner turmoil. What could I do about him?

Dad had been a lumberjack in Washington and Oregon. He had enjoyed being outdoors and had reveled in pitting his strength against the forces of nature. He had entered grueling lumberjack competitions, and had placed often. The shelves in his house were filled with trophies that attested to his prowess.

The years marched on relentlessly. The first time he couldn't lift a heavy log, he joked about it; but later that same day I saw him outside alone, straining to lift it. He became irritable whenever anyone teased him about his advancing age, or when he couldn't do something he had done as a younger man.

Four days after his sixty-seventh birthday, he had a heart attack. An ambulance sped him to the hospital while a paramedic administered CPR to keep blood and oxygen flowing.
At the hospital, Dad was rushed into an operating room. He was lucky; he survived. But something inside Dad died. His zest for life was gone. He obstinately refused to follow doctor's orders. Suggestions and offers of help were turned aside with sarcasm and insults. The number of visitors thinned, and then finally stopped altogether. Dad was left alone.
My husband, Dick, and I asked Dad to come live with us on our small farm. We hoped the fresh air and rustic atmosphere would help him adjust.

Within a week after he moved in, I regretted the invitation. It seemed nothing was satisfactory. He criticized everything I did. I became frustrated and moody. Soon I was taking my pent-up anger out on Dick. We began to bicker and argue.

Alarmed, Dick sought out our pastor and explained the situation. The clergyman set up weekly counseling appointments for us. At the close of each session he prayed, asking God to soothe Dad's troubled mind.

But the months wore on and God was silent. Something had to be done and it was up to me to do it.

The next day I sat down with the phone book and methodically called each of the mental health clinics listed in the Yellow Pages. I explained my problem to each of the sympathetic voices that answered in vain.

Just when I was giving up hope, one of the voices suddenly exclaimed, "I just read something that might help you! Let me go get the article.”

I listened as she read. The article described a remarkable study done at a nursing home. All of the patients were under treatment for chronic depression. Yet their attitudes had proved dramatically when they were given responsibility for a dog.

I drove to the animal shelter that afternoon. After I filled out a questionnaire, a uniformed officer led me to the kennels. The odor of disinfectant stung my nostrils as I moved down the row of pens. Each contained five to seven dogs. Long-haired dogs, curly-haired dogs, black dogs, spotted dogs all jumped up, trying to reach me. I studied each one but rejected one after the other for various reasons too big, too small, too much hair. As I neared the last pen a dog in the shadows of the far corner struggled to his feet, walked to the front of the run and sat down. It was a pointer, one of the dog world's aristocrats. But this was a caricature of the breed.

Years had etched his face and muzzle with shades of gray. His hip bones jutted out in lopsided triangles. But it was his eyes that caught and held my attention. Calm and clear, they beheld me unwaveringly.

I pointed to the dog. "Can you tell me about him?" The officer looked, then shook his head in puzzlement. "He's a funny one. Appeared out of nowhere and sat in front of the gate. We brought him in, figuring someone would be right down to claim him. That was two weeks ago and we've heard nothing. His time is up tomorrow." He gestured helplessly.

As the words sank in I turned to the man in horror. "You mean you're going to kill him?"

"Ma'am," he said gently, "that's our policy. We don't have room for every unclaimed dog."

I looked at the pointer again. The calm brown eyes awaited my decision. "I'll take him," I said. I drove home with the dog on the front seat beside me. When I reached the house I honked the horn twice. I was helping my prize out of the car when Dad shuffled onto the front porch.  "Ta-da! Look what I got for you, Dad!" I said excitedly.

Dad looked, and then wrinkled his face in disgust. "If I had wanted a dog I would have gotten one. And I would have picked out a better specimen than that bag of bones. Keep it! I don't want it" Dad waved his arm scornfully and turned back toward the house.

Anger rose inside me. It squeezed together my throat muscles and pounded into my temples. "You'd better get used to him, Dad. He's staying!"

Dad ignored me. "Did you hear me, Dad?" I screamed. At those words Dad whirled angrily, his hands clenched at his sides, his eyes narrowed and blazing with hate. We stood glaring at each other like duelists, when suddenly the pointer pulled free from my grasp. He wobbled toward my dad and sat down in front of him. Then slowly, carefully, he raised his paw.

Dad's lower jaw trembled as he stared at the uplifted paw confusion replaced the anger in his eyes. The pointer waited patiently. Then Dad was on his knees hugging the animal.
It was the beginning of a warm and intimate friendship. Dad named the pointer Cheyenne. Together he and Cheyenne explored the community. They spent long hours walking down dusty lanes. They spent reflective moments on the banks of streams, angling for tasty trout. They even started to attend Sunday services together, Dad sitting in a pew and Cheyenne lying quietly at his feet.

Dad and Cheyenne were inseparable throughout the next three years. Dad's bitterness faded, and he and Cheyenne made many friends. Then late one night I was startled to feel Cheyenne's cold nose burrowing through our bed covers. He had never before come into our bedroom at night.. I woke Dick, put on my robe and ran into my father's room. Dad lay in his bed, his face serene. But his spirit had left quietly sometime during the night.

Two days later my shock and grief deepened when I discovered Cheyenne lying dead beside Dad's bed. I wrapped his still form in the rag rug he had slept on. As Dick and I buried him near a favorite fishing hole, I silently thanked the dog for the help he had given me in restoring Dad's peace of mind.

The morning of Dad's funeral dawned overcast and dreary. This day looks like the way I feel, I thought, as I walked down the aisle to the pews reserved for family. I was surprised to see the many friends Dad and Cheyenne had made filling the church.. The pastor began his eulogy. It was a tribute to both Dad and the dog who had changed his life.
And then the pastor turned to Hebrews 13:2. "Do not neglect to show hospitality to strangers, for by this some have entertained angels without knowing it."

"I've often thanked God for sending that angel," he said.

For me, the past dropped into place, completing a puzzle that I had not seen before: the sympathetic voice that had just read the right article. Cheyenne's unexpected appearance at the animal shelter, his calm acceptance and complete devotion to my father, and the proximity of their deaths. And suddenly I understood. I knew that God had answered my prayers after all.

Life is too short for drama or petty things, so laugh hard, love truly and forgive quickly. Live While You Are Alive. Forgive now those who made you cry. You might not get a second time. God answers our prayers in His time--not ours.

Activities for Alzheimer's Patients

Kay Paggi at this article writes:

“I believe activities are crucial to well-being. In the past ten years, research has shown that activities play a large part in preventing the progression of dementia. We also know that socializing prevents loneliness, despair and suicidal thoughts.”

My husband can enjoy a lot of sedimentary activities. He does need a pillow to sit on however. We even have one in the car. He is happy as long as his butt doesn't hurt, but he complains a lot if his butt hurts. Walking up steps strains him and he walks slowly. About a month ago he sat in a department store while I shopped. We should have taken that car pillow in because he was verrrry angry at how long it took me to buy something that was on sale. I did think a lot about the purchase, because our funds are limited.

So here is a rundown of last week's activities, while four and a half days I worked.

Sundays are full of church activities. We have a worship service and then most of us eat the noon meal we bring at our small church. Once a month it is a shared meal where we all contribute, but the rest of the time we bring out own meals. Sunday afternoon we have a counseling class that I have to attend since I am working on a seminary counseling degree. DH sits in a comfortable chair during that class.

Monday we went to a church seniors group where we ate the lunch we brought and watched the movie, "Courageous". We have this event once a month and I don't substitute teach that day so we can attend that event. Sally and Jake also went, but Jake had trouble with the movie. He said to Sally later, "Why would they show a movie at our church where a daughter died?" They did not see the whole movie.

Tuesday morning my husband had a doctor's appointment. I will brought up our need to have a neurologist, as Dr. Raj is no longer in our insurance group. The doctor said a neurologist is not needed at this time. Also, my husband's numbers were very good, dispelling thoughts that coconut oil is not good for a heart patient. No need for a cardiologist for a stress test he also said.

Tuesday afternoon  through Friday I substituted in public schools. When I retired from teaching, I did not realize my husband would have two kinds of dementia.

Wednesday night we went to Toastmasters where he is often asked to give the invocation at the beginning of the evening. He kept alert the whole meeting and loves to accompany me wherever I think I need to go for my safety. He knows and likes the people in the group.

Friday night we ate out with Jake and Sally at Applebees. They have 2 for $20 meals and Sally and I shared the spinach dip and chips and my hubby and Jake shared the cheese appetizers before our entrées. Jake and DH had the small ice cream cups for dessert. Then we were invited over to their home for decaf and to see the progress they had made organizing their home.  I called Sally and complimented her today on all they had done. She usually works only one day a week, and Jake is more dependent upon her. Jake is more ambitious than my husband, however, and they can work on home projects together.

Saturday I taught the first half of a class for DUI offenders in Florida. I have been teaching these classes part-time for maybe eight years. Now hubby got dressed up a little so we could go to a movie and dinner. We end up seeing "1000 Words" when "Hunger Games" was sold outl He didn't like the "1000 Words" movie.

Unlike Jake, hubby is self-sufficient while I am gone, because of his check list. He is getting better at putting in his false teeth in the morning so that I can leave knowing he has had breakfast and had food with his pills. As I get into our car, he picks up the dog and the three of us critters say goodbye. The routine is expected by our dog and I often kiss both hubby and dog before I leave. When they hear the garage door open in the afternoon they both greet me at the door.

One of the problems of finding activities for my husband is that I have a lot to do myself. I have had to do gardening this week--someone has to do it. My husband doesn't seem to be motivated to do things. Sometimes my husband will do things with me, and yet many times he is content to just let me do things. Sally and I have discussed how we married men who used to do a lot more, and now it is on our shoulders. I need to learn to use the riding mower, but so far my husband (or thoughtful neighbors) mows our 3/4 of an acre.

Increasingly my husband likes less noise and a simple pace of life. Sure I would like  him to go to senior center or do crossword puzzles. Sally and I think that if both of our husbands go to a senior center together it would work, but we haven't tested this hypothesis yet. Hubby is happy and has many options for watching TV--videos, DVDs and cable TV. He also socializes very easily with people.

We always take turns praying at night before we go to sleep. Hubby prays when the date is odd, and I pray when it is even. As I have noted before, I always love his prayers and the fact the LORD is watching our Alzheimer's journey.

Book Review: The Best Friends Approach to Alzheimer's Care--Part One

“What a grand thing, to be loved! What a grander thing still, to love!” ― Victor Hugo

Here is a book with so much wisdom for the caregiver that it needs three posts in my opinion. Sally put me on to The Best Friends Approach to Alzheimer's Care by Virginia Bewll and David Troxel. Sally has started using these principles with Jake. Today's post will deal with emotions that AD patients have. I will apply it to DH for the most part. Two more posts will follow from this book.

Chapter one insightfully lists common emotions and feelings of persons with AD.

1. Loss. It took some time for my husband to decide to give up driving. I was glad that he decided, even though he had passed the Alzheimer's driving test for two years in a role. When the driving privilege was abuptly taken from Jake, he experienced a huge loss. Our husbands want meaningful roles. I still look to my husband as a protector of the family. He checks the doors are locked at home and likes to accompany me whenever he can. The other night the dog barked at the smoke detectors making noises. My husband took great pride in handling this noise, taking down the batteries and planning to replace them.
2. Isolation and loneliness. It means so much to our husbands to be together. Sally and I both substituted one day in the public schools and Jake came to our house and spent the day with my husband. Next week DH will go to Jake's house while Sally and I are out and about. Jake helped DH with the yard and my hubby will help Jake with painting a fence next week and Sally at Jake's home. I am also concentrating on being WITH my husband as I wrote earlier on this blog on 9/29/11.
3. Sadness. Both DH and Jake are not knowledgeable about Alzheimer's, so their sadness is not amplified by what is coming in the future. However, Sally and I are often sad about the situation.
4. Confusion. I get asked every morning at least four times where I am going. Sometimes I say, Check the clipboard, where I have printed the schedule for the day. My husband has started to get confused about what word to use, a further deterioration.
5. Worry, Axiety and Frustration. We have one large TV in the family room where DH watches movies for most of the day. He has a large collection of cassettes and DVDs and also finds interesting material on cable. This large TV has the only box (of our three TV sets) where we can arrange to tape programs in the future. Last night I wanted to see the program where Dr. Mary Newport was interviewed; DH was very frustrated when I didn't seem to get him back to the right channel. In fact, in his anger and frustration he decided to go to bed angry. He wouldn't take his pills. He wouldn't pray. He was livid that I messed up his TV viewing. This was not intentional on my part because I saw that he was on the news and returned to the news; by this time he thought I had lost some other program he dearly wanted to see. 
6. Fear and Paranoia. People with Alzheimer's disease often look for an explanation about what is happening to them. (p. 16) One time DH asked me if I were having an affair and of course I assured him that I wasn't and would not have one. He was lonely and this was before I started being WITH him intentionally. (Early on in the disease I started withdrawing emotionally from him, thinking that I would again become a widow as I had in the past.)
7. Embarrassment. The person with Alzheimer's disease is in a giant classroom every day, one in which he or she never has the exact answer. (p. 17) It is best to not ask them any questions. Asking their opinion might help at times, but they can't even decide what to eat on the menu in a restaurant.

The approach written about in this book lets us caregivers know that these feelings are normal. Our loving understanding can minimize these normal feelings of a person with dementia/AD. The best way I can love husband now is letting his steady personality change and understanding that these feelings are normal and being WITH him through better and worse.

WITH

I think it is so important to be WITH our Alzheimer's loved ones. They have a lonely journey if we are not there for them.  My husband wants to go WITH me on any and all errands.

I think of Sue who has stayed home WITH her hubby. He is now in the VA hospital and she can work part-time again. I saw her Wednesday and was able to hug her. We both know what we are going through when we hugged yesterday. That's the sort of hug that I give Sally when I see her. That's the sort of hug I want to give the other ladies who write/comment on this blog. I think I got the idea of HUG from Dolores.

For Pink Lady Dana who commented on the last post, I have a thought. SHADOWING. I don't know your situation there in California from here in Florida, but I would say go to the grocery store with Steve. I have read somewhere that Alzheimer's patients like to shadow their caregivers, like a puppy. Socialization helps them. We can either accept this, or we can get annoyed.  It doesn't matter if our husbands follow or if we go slowly and hold their hands. They are WITH us. Our lives have to slow down. We don't get the plan we think we need, but we get the fulfillment of being where the LORD wants us to be at this time. The Christian marriage is compared to Christ's love for His church, His bride. Christ desires to be WITH us, only we better be the puppy dog following Him, not the leader who demands He follow us.

Skye Jethani wrote a new book--With: Reimaging the Way You Relate to God.  I am thinking about his prepostions, OVER, UNDER, FROM, FOR and WITH:

• Life OVER God. People can live without regard to God, maybe angry that God has brought Alzheimer's or some other situation into their life. They may take matters into their own hands like taking a substitute love as Barry Petersen did in Jan's Story that I wrote about here in a July book review several months ago.
• Life UNDER God. This would be a life of duty WITHOUT the emphasis of fellowship. Legalism. These people bargain that their adherence to rules will mean that blessing must follow.
• Life FROM God. Christians in this category go after His blessings and consumerism taints their relationship with our Father.
• Life FOR God. People run around doing God's work and being nice. I wrote about that problem in Getting Off the Niceness Treadmill. But it isn't about what we can do for God that gives our life meaning, that pleases Him. Everything, even the mundane, is for His glory.
• Life WITH God. Fellowship with God. In Acts 4 the members of the council saw that Peter and John, ordinary men, had been WITH Jesus.  Jethani calls believers  to be WITH Jesus.

Back to the subject of this post. How are we WITH our Alzheimer's loved ones? I am WITH my husband when we pray together and how exciting it is that the soul in an Alzheimer's patient will be there beyond when the mind goes. When I go off to teach, I insist my hubby and dog Ziggy wave goodbye and blow kisses at the window--our tradition that says we love each other. I call him when I get somewhere to say I have safely arrived. I just sat with him at the end of  a romantic movie, even though I had seen it before. I am in this journey WITH him. I just made myself unavailable to substitute one day a week so I can be WITH my husband. One day I will not be able to leave him alone at all.

Lord, give me the fruit of the spirit in Galatians 5:22, 23

--especially gentleness and self-control--

so I can be WITH my Alzhezimer's loved one,

in sickness and in health until death do us part.

Ten Top Caregiving Mistakes

1. Thinking you can do this on your own. You need a support group or system for YOU, the caregiver.
2. Thinking your loved one fits a pattern of another person with Alzheimer's. Everyone is different and diagnosis is tentative. My husband has Mixed Dementia, for example, and I am so fortunate at how pleasant he is.
3. Thinking you can argue with a person who has Alzheimer's. It won't work. He will obsess about an issue that is on his mind. She will want to do things from her long-term memory that maybe she can't any more--just let her try.
4. Not establishing a schedule or routine for your loved one. This morning my husband wanted me to print out that schedule, even though we are essentially staying home.
5. Not being proactive and not thinking down the road. Simplify life, have your will completed. How can you make the house safe? How can you keep items where they belong so that your loved one knows where to find it?
6. Withdrawing from your loved one emotionally. They have changed, but that doesn't mean they don't have emotions. They lose memory, but not fondness for your love. And you need their love also!
7. Stop living your life! No! Go to Disney if they can handle it at their stage. Take them along on errands as long as they can do this with you.
8. Being embarrassed by your loved one. Wink at someone when you know they are hearing a story for a second or third time.
9. Doing too much for them. There is a lot they still can do to help. My husband folds laundry I put on the pool table. He also fills up bottles of diet Lipton green tea and water. (We reuse our bottles.) He mows the lawn on a riding lawn mower and sometimes weeds.
10. Throwing your hands up in despair.  Life doesn't owe you no problems. God is there for you.