A preview -I Am Not Alone

Have you read, Martha Garmon’s book, I Am Not Alone? Each chapter is a different Caregiver answering questions about their experience with care giving. This is an important book because we can learn so much from people who have gone before us. I enjoyed the book so much that I’ve asked Martha to do something similar to her book every Monday.

Every Monday, starting on April 22, will be, I Am Not Alone Monday. Today, I am giving you a sample of what the articles will be like. Martha will also have questions, and a release form, for you to download, fill out and email back to her. Each week she will choose one submission to post on Monday. Another possible bonus is, your story might be put in the next book, (If there is another book.)

I will still post a blog on Caregiver Survival, each Wednesday, and Harriet and I will post One Caregiver’s Journal each Friday. You might have noticed the name change from One Caregiver’s Journal to A Caregiver’s Journal. There is also a logo change coming. Watch for it.

I Am Not Alone – a preview

David

Adrian, Michigan

United States of America

First rule of Scuba diving: NEVER dive alone! First rule of Caregiving? Never Alone, develop a team.

Caree and relationship: Harriet, She is my wife

Age at diagnosis: 67

Diagnosis and date of diagnosis:     Primary Progressive Aphasia/Frontotemporal Dementia September 10, 2018

Where do you find hope? Comfort?

 My hope and comfort comes from the God of all hope. When I retired from the Lutheran Ministry, I asked the Lord, “Now what?” I had the Impression that the answer was, write, and take care of Harriet. I do love to write but Harriet does not like to be taken care of. She can take care of herself, thank you very much. The Lord laid that on my heart two years before Harriet was diagnosed with FTD. Now I understand. I am writing about Dementia and taking care of Harriet who has dementia. This also gives me hope and comfort because God knew about this long before we did.

Most of the comfort I receive comes from other people. Family, friends, and acquaintances, who express concern and pray for us. Also, I get comfort from the Facebook Support groups and all the people who read our blog and express concern, support, and lift us up in prayer.

What is one thing about caregiving, or you or others – that surprised you most? How tired I am all the time, because my whole sleep schedule is messed up. I keep trying to get enough sleep, but it doesn’t seem to happen, which messes up everything else I need to do.

 The thing that surprises me about others is the number of people who think they know more than all the doctors. We have family members who seem to think that Harriet is either faking this or is a hypochondriac. She’s failed the tests with our primary care doctor, a Neurologist, and a Neurological psychiatrist.  Mayo Clinic looked at her records and said she was too far along to gain anything from their classes on Mild Cognitive impairment. Despite this, a few family members, refuse to accept the diagnosis and want to argue the point. If she had been diagnosed with cancer or heart disease no   one would treat her like this.

How do you take care of yourself?

I pray, go to church, go to men’s club, read, and do odd jobs around the house. I don’t take care of myself well, because I don’t sleep well, exercise enough, and eat too much junk.

What do you do when you hit bottom?

I curse, swear, blaspheme and cry. When my temper tantrum is over. I pray, asking for forgiveness for taking the Lord’s name in vain, and asking for strength to press on.

What is the best/worst piece of advice you have ever been given?

The best is, get your house in order. That is, get educated about FTD, trained to be a caregiver, make any necessary changes to your house and get your legal papers in order.

The worst is, ignore the doctors because everything is going to work out. If you go to the doctors enough, they will find, or make up, something to get more of your money.

What is the best/worst thing you have learned about yourself?

The best thing is how patient, forgiving, and gentle I can be with Harriet once I know what is going on and why she is behaving in a negative way toward me.

 The worst is, how impatient, angry, and what a jerk I can be. In my entire life I have never used such profanity, not even when I was working on the assembly line for General Motors.

What would you most like to tell someone who has become a caregiver?

That being a caregiver kills a lot of people. Get educated, get trained, develop a care team, don’t try to do this alone. Take care of yourself because if you don’t there is a good chance that you will die before your loved one.

What would you do if someone handed you $100,000?

I would invest it for future needs. At this time, I do not need to hire anyone to come to the house and take care of Harriet. I probably will in the future, and will undoubtedly have nursing home, day care, hospice house, and other expenses.

What would you do with an extra three hours a day?

Get caught up on my sleep, exercise, ride a bike, get the house cleaned up.

What do you wish you had more of?

Patience, joy, Peace, I am so tired of being angry, sad, grieving, bitter, etc.

What are five easy things you do to relax or find joy?

  1. Singing hymns, praise choruses, gospel songs.
  2. A good time of prayer, praise and adoration, really strengthens me.
  3. Time hiking, fishing, swimming, bike riding, boating, anything that gets me outdoors, always renews me.
  4. Bike riding, walking, lifting weights, good vigorus exercise.
  5. Reading a good book.

What is the best/worst question you have ever been asked?

The best was: Could I take Harriet out for lunch and a shopping trip next Tuesday? This question was from our sister-in-law, and is specific as to what, where, and when. By the way, they had a great time.

The worst was: During a discussion about Harriet’s dementia, I was speaking about what she could no longer do. A family member who, because Harriet’s symptoms are not like Alzheimer’s, doesn’t believe she has dementia, leaned forward and asked, in a very snotty tone of voice, “Are you sure she can’t do those things, Come on! Are you sure, Are you?”  If I had been closer, to him, I would have knocked him on his ass. I have forgiven him (He hasn’t asked, but I already have enough crap to carry around,) but I will never speak to him, or his wife, about Harriet’s condition again.

What are three things someone could do to help YOU (not your loved one, but you)?

  1. Don’t ask what you can do, when you are only asking because you think you should. If you know that you will not actually do anything, just tell me you’re sorry, give me a hug and move on. This disease brings enough frustration and disappointment, without you giving me false hope.
  2. Think of something specific, such as: could I, bring dinner over Tuesday evening? take Harriet shopping Monday afternoon? stop by for a visit while you go somewhere? etc. When your help is on the calendar it is a relief and blessing to me.
  3. Unless you have a MD behind your name, or are struggling with dementia yourself, keep your opinions about Harriet’s doctors, care, and miracle cures I need to try, to yourself. I am tired of being told how stupid I am because I do something you don’t like, or don’t do what you think is best, about her medical care.

When was the last time you cried?

Saturday April 6. We were at an anniversary party, for some friends, Harriet told the same story three times to a granddaughter of the host. I would share something and two minutes later she was saying the same exact thing as if it hadn’t been said before. That was the first time she has done this. (This answer was written on 4/6/2019)

Do you like yourself?

Yes, I like some things about myself.  However, there are things that I do that I do not approve of or like. I don’t like being around people with a quick temper who curse and swear. Yet, here I am. I don’t like it when people lie to me, but I lie to myself all the time. An example? I will never swear, curse, or use profanity again.

What is the hardest thing you have faced?

Our son’s incarceration was very difficult, heartbreaking, and full of despair. However, it was the result of his own misdeeds. 

Harriet’s dementia is difficult in a different way. Harriet hasn’t done anything to bring this on herself. When someone you love is in prison, you adjust to the new reality and life goes on.  With FTD you continue to face grief because this new reality changes day by day. Sadly, the changes are almost always for the worst.

What is the one thing that no one can understand about your situation?

What the situation is like day to day. Harriet can appear totally normal when family or friends are over, we go out with friends, or at a doctor’s appointment. What they don’t know is that, being around people, for a long period of time will lead to exhaustion. It’s like she has run out of gas and needs a huge amount of time to recover. When people say, “I thought Harriet had dementia, but she seems as good as ever to me.” I want to answer, “Why don’t we have her go home with you for the next couple of days, and then tell me what you think.”

What is it that everyone should know, but no one wants to talk about?

How much FTD changes your relationship. It seems that everything changes. Your Loved one goes from someone who is involved and passionate about your relationship to someone who is indifferent, apathetic, or hostile. Romance and sex are gone, and if they display an interest it is weird. Ours was gone unless she was drunk or on Ambien. Finally, the change never stays permanent. The only constant is there will be more change and it will usually be for the worse.

Do you have support from family? Friends? Church? Others?

We have support from most, not all, of our families, friends and church groups. So far, we have only needed moral support. I have the feeling that there will be less and less people helping when I need to get away. I say this from the things I’ve studied more than anything I have experienced.

What do you miss the most?

We used to be partners in every decision. About eight to ten years ago that changed and instead of working with me she was either hostile or indifferent about anything that concerned me. In many ways it feels like she has left the marriage and yet, she is still here. The old question, “Who are you and what have you done with my wife?” comes to mind.

Do you have any humorous story you would like to share?

Harriet has a plan, which she will probably never use, for the friends and family who believe that if you don’t have the symptoms of Alzheimer’s, you can’t have dementia. She says that from now on, when she sees these people, she will act like she has no idea who they are. After about an hour she will look at them and ask, “Aren’t you ________?”

Anything else you would like to add,

Live for today, yesterday is gone, and tomorrow is unknown. God will give you grace and strength for whatever today brings. God cannot give you grace to carry the burdens of the past or to dread what tomorrow brings. Forgive and accept forgiveness for everything that you’ve gone through in the past. Trust and put your faith in God for the future. Accept the grace that is offered for today. In this way you will be an overcomer.

List any resources that you have found helpful in your journey.

  1. The Association of Frontotemporal Degeneration website.
  2. Frontotemporal Dementia Advocacy Resource Network (FTD ARN)
  3. Alzheimer’s Association website
  4. Mayo Clinic website
  5. The AFTD Support group on Facebook
  6. The AFTD Spouses support group on Facebook.
  7. Ask the AFTD Patients, support group on Facebook.
  8. Teepa Snow, You Tube, C.D.s and books.
  9. Dr. Natalie’s CareBlazers on You Tube.
  10. Mace, Nancy L. and Peter V. Rabins, The 36 Hour Day, Baltimore, MD, Johns Hopkins Press, 2014.
  11. Radin, Gary and Lisa Radin, What if it’s Not Alzheimer’s, Amherst, N.Y., Prometheus Books, 2014.
  12. Petersen, Ronald C. Mayo Clinic on Alzheimer’s Disease., 2013.
  13. Garmon, Martha L., I Am Not Alone, 2018
  14. Odell, Cindy, FTD Doesn’t bring me flowers – Living with FTD. FTDNOFLOWERS.BLOGSPOT.COM
  15. Eshbaugh, Elaine M., Welcome to Dementia Land, welcometodementialand.com Blog at Word Press
  16. Winquist, Cindie, Barefoot Lily Lady, Blog at Word Press
  17. Garmon, Martha, The Path Not Chosen, Blog at Word Press
This book is available on Kindle or Amazon.

Click on this link to go to an online form to submit your interview and release form:
“I Am Not Alone” Interview and Release Form

Here are the questions that you can download on April 22.

Name:   

Address (only city, state will be used in book):      

City, State:   

Email:   

Caree name and relationship:  

Age at diagnosis:

Diagnosis and date of diagnosis:  

INTERVIEW QUESTIONS:

Where do you find hope? Comfort?

What is one thing about caregiving or you or others – that surprised you most?

How do you take care of yourself?

What do you do when you hit bottom?

What is the best/worst piece of advice you have ever been given?

What is the best/worst thing you have learned about yourself?

What would you most like to tell someone who has become a caregiver?

What would you do if someone handed you 100 thousand dollars?

What would you do with three extra hours a day?

What do you wish you had more of?

What are five easy things you do to relax or find joy?

What is the best/worst question you have ever been asked?

What are three things someone could do to help YOU (not your LO, but you)?

When was the last time you cried?

Do you like yourself?

What is the hardest thing you have faced?

What is the one thing that no one can understand about your situation?

What is it that everyone should know, but no one wants to talk about?

Do you have support from family? Friends? Church? Others?

What do you miss the most?

Do you have a humorous story you would like to share?

Anything else you would like to add?

List any resources that you have found helpful in your journey.

INTERVIEW RELEASE FORM

I understand that Martha Garmon, (the Author) is preparing, writing, and will publish a work on the subject of caregiving for persons with dementia. The book is currently titled “I Am Not Alone” (the Work).

In order to assist the Author in the preparation of the Work, I have agreed to be interviewed and to provide information and other materials to be used in connection with the Work, including my personal experiences, remarks, recollections, and photos.

I hereby grant permission to the Author to quote or paraphrase all or any portion of the interview in her book or future works. I (  ) do ( ) do not grant permission to use my name. Permission granted is for world rights in all languages and editions of the book, including electronic editions.

I understand and acknowledge that the Author, and possible future publisher, will be the sole owner of all copyright and other rights in and to the Work.

I acknowledge and agree that I am not entitled to receive any form of payment from the Author or future publisher.

Agreed and confirmed:

_____________________________________ Date: _____________

Signature

_____________________________________

Name (print)

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