Saturday, April 27, 2013

Another To-Do List But I Need a How-To List

Hunter Stars and Pinwheels using HSTs, my
latest obsession... And note the coffee theme. My
latest addiction....
I seem to spend more time making To-Do lists than actually doing the things on the lists.

This morning I decided that this is the list I will use. I will print it out and post it and look at it and take great delight in crossing things off of it. Major projects, not just -- brush my teeth (check); wash the dishes (check)....

I would put things on my list such as:

  paint the wall in the entryway

  clean out the garage

  organize the things in the garage
  finish the table for the patio

  clean up the office and make it less cluttered

Notice the fancy lettering? The symbol/bullet before each entry. Yes, I took great pains to spruce up this To-Do List. I filled a page with major projects I needed to accomplish and some had to do with quilt making and charity quilts and sharing with others.

But the last entry is perhaps the most difficult for me.
  give myself permission to have nice things and to have things the way that pleases me…
I see my husband losing his battle. An inch here, a breath there. Everyone who sees him these days say, "Looks like you've lost weight." I'd be pleased if they said that to me. But for Derrol, it means that he's losing the battle. More muscle has faded from his frame and with it his strength. By evening each day he quietly says, "I wish I could stop hurting."

And yet we are so fortunate. At least he can still talk, unlike too many of our friends who are dealing with ALS that hit them in the throat and stole their voice, their ability to swallow and their joy of food and eating. We still have food, although choking and dropping food sometimes interferes. And we have a kind of communication that begins with him mumbling something. I respond with a, "I didn't understand a word of that." And him making great effort to enunciate or do hand movements o
r roll his eyes or point until I understand. Every movement, every word is laborous and he quickly becomes short of breath.

He's most comfortable in bed with a ventilator helping him breathe.

Theo, our dear kitten, has adapted well to our strange lifestyle. Better than I have, because I seem to always be on pause. He snuggles and cuddles and keeps his claws tucked away. He seems to enjoy the afghan I knitted almost as much as Derrol...

I start a quilt project and wander away from it, feeling like there is something else I SHOULD be doing.

I begin a strenuous project such as painting the floor of the screened porch and see in his eyes the pain and anguish. He was the one who did such things -- before the ALS. He was the power and strength. WE worked together on all things. But now he watches and sees me struggle and do things 'not quite right' and frustration and anger builds. He has no way to escape his demons. No way to make his body do what he wants it to. He's trapped in this flesh and bone overcoat that may as well be cement.

So I tend to make To-Do lists and sneak around to do things that will give him pain and make him feel his disease even more -- not just feel it in the cramping muscles and weakness and choking and inability to breathe -- but in his soul. How can I take pleasure in creating a beautiful quilt, the joy of creating. How can I enjoy the symmetry of a room cheerfully decorated and inviting when I know that he will never see it because his power chair will not fit through the doorway or make the turns from hallway into the room?

So, before I can accomplish the long string of projects on my To Do list, I must first find a way to shake off the lethargie and survivors' guilt and continue living. How does one even consider life when all around me are the signs of dying? How indeed. I need a To-Do list to show me what things I can do, steps I can take to join the living again and stop waiting to die. A How-To List.  How indeed....


Anonymous said...

Go create something.
Just do it for the sake of your own sanity. If you do not care for yourself through this caring for Derrol will be even more difficult as time goes by.
I recently read another quilters blog and she breaks her tasks down into manageable parts or sets time limits for working on those tasks. for example weeding: she weeds for one hour. that's it, she's done. Once you're done, go create something.
You have a support group in your quilting community - tap more into that let our creative energy help fill you up and carry you through this.
I'd also check with the local hospital and see if there is a support group that can help you through some of this.


"quiltersmuse" said...

Dawn, I am so sorry for this part of your life journey that is so difficult. A friend had ALS and it seems to be one of the most difficult diseases for the patient and the family to endure. Kudos for bringing a loveable fur-ball into Derrol's life when he most needed a constant companion who is not judgmental. Time will solve all. In the meantime, you are trapped between the pillars of loving and letting go. Blessings to you. Always, Pat

Christine Thresh said...

You care and that's important. You need hugs so here is one {xxx}. Keep up your good work. Your FB posts give us such interesting information and pictures. Thank you.

Sue Kaufman said...

Keep a knitting project close by. Something to do with your hands that doesn't require deep thought. You don't need to do any other projects right now. Spend your time with him ♥

Marie Costa said...

Just wanted to let you know that I'm still reading your blog and I'm sending you and your hubby (((HUGS))).

Monica said...

It is the worst of diseases as it robs you of your abilities and leaves you mind intact so that you are always aware. And for you the care giver it is the hardest of all. Know that you are in my thoughts. Make the to do lists whatever eases the hurt. hurrah for kitty. So much love and caring from you.

Anonymous said...

Hiya Kid! I read your post and can sympathize completely. I looked after my husband (COPD, heart failure) for about three years before he passed away in January of 2009. I also have an autoimmune disease (we didn't know it at the time) which sapped my strength. I tried to keep him from knowing how exhausting it was to keep house, shop, cook, do all the things I had to do for him and still keep a happy outlook. My guilt trip wasn't the same as yours, but is just as real. It came about right after he died.... one of my first thoughts was "now I don't have to do that anymore"...... I'm still trying to get over it. Guilt is a sneaky feeling and should be treated as a method of bullying... I'm confronting mine but with great difficulty. I guess the main reason we feel as we do is because we really love the other person in our lives who needs us so much. I never resented "doing" for my wonderful husband, and I miss him terribly. All I can tell you is that YES, it can be overcome. Just takes time. Lots of time.

Love and hugs from Chris Gilman (friend of Sunny Hemphill)

Anonymous said...

I am so sorry to hear about you and your husband Theo and your life with ALS. What an awful disease that is. I had a friend who had PLS which is a form of ALS. She found great comfort and support at a local support group for ALS. I would take her to her meeting every month and there was always someone new at the meeting. There are no answers for the questions you ask yourself. But know there is a stranger out here thinking of you and Theo.

Mary said...

I just found your blog and am saddened to read what you and your husband are going thru. ALS is indeed a terrible thing--take time for yourself and try not to feel guilty about it--Peace and prayers, Mary Bonnell

lynda said...

I am helping csre for my terminally ill is hard because we have never done this before, and we make up the" rules" as we go along!
Whatever you do is right for you...just take care of yourself and spend time together (and the cat is definitely a blessing!)....

Carolynn said...

For my own personal journey,I find I have great problems with the what I have no control over.My daughter has autism anf I have chronic fatigue syndrome and fibromyaligia.Because I'm more "housebound"than most people, I like you,enjoy the changing of paint color,re-decorating(usually on a garage sale budget)Some rooms take a week or more to paint ,but the change in my outlook on life is so worth the effort.
It seems if one area of our lives is falling apart we want to build the other parts stronger.
I've raised 2 children since my diagnosis,I wasn't the "soccer mom" I would have been if fighting my diminishing health.I did however spend much more "quality time" with my children than their friends moms did.I focused on what they emotionally needed,what skills I could teach them.Our daughter had very limited speach until she was 11 years old and frustration was such a major issue .She learned to read and write because she didn't speak,she used flash cards with simple words and actions before that.Sign language was also very helpful,many autistic people use a simple computer program,I wonder if Ipad has an app your husband could use,perhaps it's touch screen would be within has capabilities ?Even a simple chart with actions and words might deminish some of his frustration.
I found reading to my daughter and son very soothing for all of us,the frustration over our "disabilities" could be forgotten as we lost ourselfs in a wonderful story. There is so much guilt you can heap upon yourself for what you cannot change that it hangs over you like a black cloud.I got so angry at my own doctor when at point of time I was having overwelming fatigue and pain where I could barely get out of bed,he flippantly told me I needed a hobby.Looking back on that day he saved my life.Hand piecing,hand applique can be done laying flat on my back, I can stitch a seam or two while sitting with the family as they watch tv.Even if I only piece one 6 piece hexagon flower the change in my perspective of my little corner of the world is transformed for today.My suggestion to you is would spending time with your husband with "hand work" an activity that would benefit you both?
I'm sorry if this is a little rambling,I wanted to enclude what suggestions I could.I also want you to know your feelings are so normal,life is a cycle and sometimes the paths you ride that cycle down are more hilly than others.I for one am cheering you on to the finish line knowing there are so many wonderful journeys to come.

Melissa said...

My heart goes out to you. Please remember to care for yourself at the same time you are caring for your darling husband. If it makes you feel better to have the floor painted, then either do it yourself or have someone else do it. Your DH knows that he cannot do it but will take pleasure that you are happy with it being done. Your friends and those of us who don't know you personally but follow your FB and blog are here to listen, help, and support you. Take good care...sending hugs and warm thoughts to you and yours.

valerie said...

Being the survivor and caregiver is a difficult balancing act. It's like nothing anyone who hasn't done it can ever understand. I'm with you. Take care of you. I remember conversations with my Mom in which we each expressed these very feelings - I felt guilty for being healthy, for living on. She felt guilty for being frustrated with us. But we all practiced at finding the grace of caring, and of feeling just what we did- anger, sorrow, pain - and JOY.

Quiltluver said...

Dawn, I'm so sorry that you are going through this. I went through this with my mother for the past year. It is important thing is to take care of yourself. Many caregivers are so focused on caregiving, which is exhausting, that they end of sick themselves. Take what pleasure you can when the opportunity presents itself. It is hard seeing your loved one in pain. I was comforted that when the time came that my mother could no longer speak for herself, that we had already had the conversations (and legal documents) about what she would want in regards to medical intervention. For many months, we struggled alone with medical care, applying for assistance, multiple hospital and rehab visits. When my mother decided that she no longer wanted cancer treatments, hospice was a godsend. They helped so much that I wish we had involved them sooner. Guilt is not a burden you should add to your already heavy load right now. Guilt is never helpful, and will add to the depression you may be feeling. Take care. My thoughts and prayers are with you and your family. Karen

Judy McCarthy said...

Dear Dawn, I don't know you, but my heart goes out to you during this most awful stage of your life. What a blessing your little kitty is.Animals can bring such comfort.
Take time to stitch so that you can have a mental break from worry.Your story has resonated with many other people.Life can be extremely difficult at time.

Eileen said...

Dawn, I agree with Teri; you have to create if you want to keep up with your care for Derrol.
Know that there are those of us who are out here thinking of you, even if we don't say anything. I'm sending good thoughts for you and Derrol. God bless.

Virginia Guin Reese said...

Hi Dawn, I only know you through reading you FB posts. This was the first time I visited your Blog not realizing you had one. I'm sending my prayers your family's way so you can get wrapped in HUGS of LOVE. I say move the last entry on your To-Do List to the first and everything else will fall into place. I've struggled with both of my children having mental and emotional issues from their eariy childhood till this day. I take one day at a time now and it allows me to help them work toward living independant adult lives.

Jean(ie) said...

Hugs. New reader. I found your blog by clicking on the "next blog" button on blogger.

It is so tough to see a loved one go and have no control over the situation. I know that I would feel completely helpless.

having a mindless hand task at hand will help. Perhaps some hexies, redwork, or other needlework? Make small projects so you feel like you're artistic side is accomplishing something.

Sending prayers of strength, wisdom, faith and peace to you and your loved ones during this difficult time. Hugs.