Caregiver's Fabulous Birthday

We laughed at the birthday card pictured here that my husband gave me and so did the clerk. He turned around to see if the clerk thought his head looked like the model on the card! On the inside were birthday wishes and "you are my main squeeze"! And he wrote that he promised to help with dishes!

My birthday was yesterday and my husband and I set out to celebrate it. Ordinarily I would not post this celebration, but I wanted to post it as a celebration of good times. We both enjoyed the day and I just didn't notice he was  memory-impaired.

First we had brunch at Cracker Barrell where he noticed the surroundings and commended on them. He talked about the man over seven feet tall. I asked "where". He said he would show him to me when he returned to the room. Sure enough--he showed me--no short-term memory with that experience. And he said this memorable quote,

Enjoy life. Swish it around! We are retired!

We went on Channelside, a place in Tampa where I had never been.  There we shopped, shared Mud Pie Mocha ice cream at Cold Stone and went to the movie, "Killer"--plenty of action for him and romantic comedy for me. I left my glasses in the movie--we all forget things!  My husband was very calm when I discovered my loss. He drove back maybe six miles so I could retrieve my glasses. He paitiently waited in the car while I went back to the Cinema. I was expecting a call on my cell phone--Where are you?" But he did not call--excellent short-term memory again!

During time in the restaurants he reminised. I wrote down what he said and thoroughly enjoyed the day. He talked about his father's time in the service and his time in the Coast Guard. When he bought my birthday card pictured here, he even bought himself a Coast Guard cap --said he had always wanted that cap.

There were quite a few birthday greetings for me on Facebook and I will post pictures on his Facebook photos so that he remembers yesterday as I have for other events.

My gifts from others included two books on Alzheimer's that I will review this summer on Plant City Lady. When I opened them I had to hide them from him so he wouldn't see a word like "dementia" on the titles. He doesn't want to be treated like something is wrong with him. Yesterday I hardly noticed anyway!

Quotes on Memory



“We do not remember days, we remember moments. The richness of life lies in memories we have forgotten.” ~ Cesare Pavese (The Burning Brand)

“People will forget what you said, people will forget what you did, but people will never forget how you made them feel.” ~Maya Angelou

“You never know when you’re making a memory.”~ Rickie Lee Jones
 
     Jonas says, "But why can't everyone have memories? I think it would seem a little easier if the memories were shared. You and I wouldn't have to bear so much by ourselves, if everyone took a part."
     The Giver sighed. "You're right," he said. "But then everyone would be burdened and pained."  --Lois Lowry (The Giver)

"To live is to remember and to remember is to live." ~ Samuel Butler

“Memory is a way of holding onto the things you love, the things you are, the things you never want to lose.”   ~ From the television show The Wonder Years

"Everybody needs his memories. They keep the wolf of insignificance from the door."  ~ Saul Bellow

"Memory is what tells a man that his wife's birthday was yesterday." ~ Mario Rocco

"Memory is the diary we all carry about with us." ~ Oscar Wilde

"The worst part of holding the memories is not the pain. It's the loneliness of it. Memories need to be shared."
~ Lois Lowry (The Giver)

"Sharing tales of those we've lost is how we keep from really losing them." ~ Mitch Albom (For One More Day)

"We’re so caught up in our everyday lives that events of the past, like ancient stars that have burned out, are no longer in orbit around our minds. There are just too many things we have to think about every day, too many new things we have to learn. New styles, new information, new technology, new terminology … But still, no matter how much time passes, no matter what takes place in the interim, there are some things we can never assign to oblivion, memories we can never rub away. They remain with us forever, like a touchstone."   ~ Haruki Murakami (Kafka on the Shore)

"In truth a family is what you make it. It is made strong, not by number of heads counted at the dinner table, but by the rituals you help family members create, by the memories you share, by the commitment of time, caring, and love you show to one another, and by the hopes for the future you have as individuals and as a unit. " ~ Marge Kennedy

“If you wish to forget anything on the spot, make a note that this thing is to be remembered.”~~ Edgar Allan Poe

“We must always have old memories and young hopes.”~~ Houssaye

"God holds all of our memories." ~~  Elizabeth Weber, workshop 10/23/10

Communication 101

"You didn't tell me," he said.


"Yes I did," I softly said and let him go on and on angry.


"You don't make sense."



Communication became hard yesterday. It made me realize again to write things down for my husband. When I talk about things in the future, he says to not bother him with it until that day.

I had to leave the house early yesterday. I left breakfast out for him and of course his morning pills. I called to remind him midday. He hadn't eaten. So I told him midday to eat both halves of his sandwich. I reminded him we were going to pick up my car at Firestone garage and pay/charge that $1100 bill when I came home. By the time I came home in his car I had used all day, all he had eaten was one half of the sandwich and also no breakfast and no morning pills. He wasn't ready to go with me to get my car. He was angry. "You did't tell me." I had told him, but he forgot.

Lord help us in this season.

Issues to Address

A long train ahead in Plant City. I couldn't go back and I couldn't go forward. I called to say I would be late. Stuck in traffic is like feeling hemmed in by all kinds of issues. Lots to contemplate and lots of stess. My sweetheart is happy and I can't share with him my worries and fears.

• What kind of dementia does he have?
• Is his recent nausea related to that dementia or is it a symptom of some other ailment?
• When will he need to stop driving? How will it go to take this freedom away from him? He is happy now, but will not driving be the straw that breaks the camel's back for him?
• How can I get financial help for his medicine? Where will the funds come when I need to stay home and not work?
• How can I stay afloat from depression myself? Will a support group be the answer?
• How can I our simplify life? 

A longer wait for these answers than for this long train.

Dear Lord,
Thanks for  prayer warriors and for family who care. Bring comfort to my soul and wisdom for each day. Help me accept this season of  for better or worse, in sickness and in health, for richer or poorer. Amen.

Third Book Report--Could It Be Dementia?

So far this is the only Christian book on dementia I have found, and it is fairly new--copyright 2008. It was published in the UK where caregivers are called "carers". The authors, Louis Morse and Roger Hitchings, both work for Pilgrim Homes in England and are used to dealing with dementia patients. They write from a Christian perspective and answered questions for me.

• Maybe we do need "Parish Nurses" to show how Christian do love each other(John 13:35). I am in the process of finding a support group or maybe starting one. "Looking after someone with dementia is not just time consuming--it is all-consuming. It drains your emotions, your energies and your finances." (p. 170)
• Loneliness is painful for people with dementia. Okay! That's why my husband loves for me to sit by his side while he watches old movies that bore me. Conversation doesn't always make sense to him, but he loves to be with me, go on errands with me. (He used to not like to go shopping with me before the dementia set in.)  
• I need to keep my husband as involved as is possible the authors suggest. I came home yesterday and he was preparing to mop the bathroom floors. I will let him finish that instead of doing it myself.
• My husband swears now when he is frustrated and while this bothers me, I read "The swearing is not because of a suppressed sinful desire--it is the disease. . . .Part of the impact of that terrible illness is this aberrant behaviour, and he has no control over it. It is not that he doesn't want to control it--it is beyond him." (p. 142) Fortunately he doesn't swear at me, just other drivers, or situations that frustrate him.
• "There needs to be less focus on their 'deficits', and more on their needs as human beings." (p.149) My husband is not a disease, but a wonderful human being with personality, likes and dislikes. The authors stress having photos and memorabilia around so that he is reminded of his likes and memories. He has photos of memories on his Facebook page and I am still trying to get him to respond to grandchildren who post on Facebook. I need to make his scrapbook soon!
• "Caregiver syndrome can lead to high blood pressure, diabetes and a compromised immune system." (p. 123) I need to take care of myself so I can take care of my husband. I guess I need a support system perhaps more than this blog.
• He asks me repeatedly "How was your day?" and I repeatedly tell him. I am afraid to ask him how his day was because he won't remember. "People with dementia still need to know that they are loved. They want the same kind of reassurance you would give a child--or anyone for that matter--a hug and a reminder that God loves them too." We often tell each other that we love each other and show it in other ways.
• "And sometimes, an individual who is not normally able to speak coherently will say the most beautiful Grace. One home manager said, 'Even when everything looks to the contrary, I am convinced that the Lord keeps His connection with us, through to the very end.'" (p. 118) Where once my husband initiated devotions and theological discussion, now I need to initiate Bible reading. Yep! He still prays wonderful prayers, as if he doesn't have dementia.

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.

First Book Report--The Coconut Oil Miracle

Coconut oil has all kinds of benefits including helping fight dementia. With the right eating it can help weight loss as it promotes overall health.

Bruce Fife, author of The Coconut Oil Miracle, writes:

As I learned more about diet, health, and coconut oil, I realized I was eating the wrong kinds of oil. Instead of going on another diet, I replaced the processed vegetable oils I was eating with coconut oil. I used butter instead of margarine, I ate fewer sweets and more fiber. I didn't reduce the amount of food I was eating, and I probably ate more calories than I had before because I began eating more fat in the form of coconut oil.

A strange thing happened. I didn't expect it to happen, and I didn't even notice it until months later. My pants were becoming looser. . . .I was shocked because I wasn't dieting. I wasn't trying to lose weight, I was just trying to eat healthier.

I ran out of hair conditioner and tried coconut oil. However, it is like an oil treatment and then I washed it out with shampoo. Hubby doesn't have too much hair, so we don't worry about hair conditioner or oil treatments for him.

What It's Like to Have a Husband With Dementia

• He says, "Am I 92?" He is 72.
• He says, "Is it 2008?"
• He confuses the credit card and the debit card at the pump. No, sweetheart, we don't have a pin number for the gas credit card. Wish we could have used the debit card as we usually do but money is tight. Will pay off that gas card when the bill comes in, however, next month.
• Thinks the clicker to open his car will also open and close the garage door.
• Forgets what he had for dinner last night so I can serve the same thing several nights in a row.
• Forgets to eat lunch I have made him when I am gone. Once I came home and he had forgotten both breakfast and lunch--a concern because he is diabetic and also missed his two servings of coconut oil. Now I call him to see if he has had lunch/breakfast.
• Knows coconut oil helps him. Jokes that when he slips into bed he slides across the bed.
• Has no interest in books and little interest in his computer anymore. We have gotten rid of books and much of his shop equipment.
• Watches TV much of the time. Don't know how many times he has watched "Godfather" movies--all of them. I record the evening news on my iPod and watch it the next day or go in the bedroom to watch TV.
• He loves that I can write on a little notebook computer by his side while he watches TV movies that bore me.
• Long term habits are great. Does yard work and makes the bed. Will vacuum and clean the carpet, although sometimes the process is confusing to him.
• If I ask him to do something he will forget. What husband doesn't! I try to put things in writing or I will be a horrible nag. Even if it is in writing, I have to be patient.
• I put new procedures in writing. He uses the calendar and has a wrist watch with the days of the week and the date on it. Several days he has forgotten lunch which I had prepared for him on a plate in the refrigerator.  
• Loves Ms. Garmin, the car's navigational device. Have put in writing how to use it. Able to run errands when I am not home with that device.
• Still very loving and considerate. Loves accompanying me when I am out and about. He trusts me.

The future? There are many kinds of dementia, the worst being Alzheimer's. Being married to a husband with dementia, not diagnosed as Alzheimer's at this point,  is just a challenge on worst days and on many days livable. Will offspring get dementia? Will I get dementia? Will we be able to stay in our home? Will the new health care bill cover  medical bills in the future or bankrupt us in the near future?

We all just live day to day and place our future in God's hands. He has guided us in the past. To God be the glory in all things.

"Be Your Wife's Best Friend" Hubby Said

At my church the pastor went around the room and asked each husband what is the duty to a wife. Not knowing if my husband could come up with an answer, I wrote down a couple of ideas to show him. He didn't need my help. He said,

The husband's duty is to be his wife's best friend.

I could not have come up with a better idea,

 and he does love just being with me.

Short, Short Story

“The Old Grandfather and His Little Grandson” by Leo Tolstoy

     The grandfather had become very old. His legs would not carry him, his eyes could not see, his ears could not hear, and he was toothless. When he ate, bits of food sometimes dropped out of his mouth. His son and his son’s wife no longer allowed him to eat with them at the table. He had to eat his meals in the corner near the stove.

     One day they gave him his food in a bowl. He tried to move the bowl closer; it fell to the floor and broke. His daughter-in-law scolded him. She told him that he spoiled everything in the house and broke their dishes, and she said that from now on he would get his food in a wooden dish. The old man sighed and said nothing.

     A few days later, the old man’s son and his wife were sitting in their hut, resting and watching their little boy playing on the floor. They saw him putting together something out of small pieces of wood. His father asked him “What are you making, Misha?”
     The little grandson said, “I’m making a wooden bucket. When you and Mamma get old, I’ll feed you out of this wooden dish.”
     The young peasant and his wife looked at each other, and tears filled their eyes. They were ashamed because they had treated the old grandfather so meanly, and from that day they again let the old man eat with them at the table and took better care of him.