No one gets outta here alive..............

That is a quote from my friend Amy L., but she might have lifted it from Jim Morrison of The Doors...and not sure if he made it up or not or lifted it from someone else.

What a week it has been...I showed my husband THE book (Passages for Caregivers) because I have all of the Caregiver Burnout symptoms. I shared this list with my husband and he has been a sweet support...suggesting that I get a massage and I will... soon, I promise, I know I will...soon. I have done a few things though: signed up for a painting class on a caregiver day,"looking for delight in things I used to love". I am taking a 2 week class about the Soul's Transition in an attempt for spiritual experience. I went to the skin doctor to have him look at a "suspicious skin lesion".

So yes I am trying, but the thing that is sad on many levels is what is happening around me while I am too busy to really acknowledge it. Everyone else is getting older and having their own issues. My life is so wrapped up in Mom that it is kind of a shock. I did mention my concerns about wanting some quality of life with my husband in my last post. We are trying for a few minutes here and there.

Other things are happening though: I have 2 friends with breast cancer;my sister's health is declining and she may have to leave a 48 year career that she has loved; my cousin was telling me about some of her health concerns; my best friends husband is having health issues in addition to her own severe back pain;I was surprised to find that 2 other acquaintances have pacemakers and another has a defibrillator. I mean come on all ready! And last night I had to sleep sitting up because I ate fried food for dinner.

Is it really Uranus in Aries? Or 2012 roaring in? Is it really happening that I am getting older? And that my friends are joining along with me? One of my dearest friends gave me a beautiful bracelet that has the Serenity Prayer engraved in it:

God grant me the serenity to accept the things I cannot change.
The Courage to change the things I can.
And the wisdom to know the difference. Amen.

Scarey thoughts.........

I am still very involved in reading Passages for Caregivers. While it is so supportive of many things in my life right now (the problem of not being able to sleep through the nights, no appetite, or ravenous,feeling guilty about doing anything for myself, being about not having time to myself...)
What is hard right now is that the author is writing about her journey with her husband, who had esophageal cancer, his recurrences and the effects from damage due to radiation. This not only scares the Hell out of me, but also makes me resentful. Will I have time left for him? Will he last longer than my Mother? Will I last longer than my Mother? Will I get to spend time with my grand-daughter before she is too old to want to hang out with me? There are days that I just don't know for sure. Lately this has been on my mind much of the time. How much of me will be left for anyone else, or even me.

I do know that I can't obsess about all this, and I try to breathe and say that I have to live life on life's terms but scarey thoughts do creep in. I go from feeling good and supported to feeling sad and scared.

Its the little things........

Last summer I drove to California to help my sister move out of her home. Actually I was only one of many helpers. The reason I am mentioning this is that driving for 6 and 1/2 hours, alone, with an excellent book on CD and then the same amount of time back seemed like a vacation to me.....and that sounds pathetic, even to me.

I write this because I just went to Los Angeles for about 24 hours to see my daughter perform in a play. I had a wonderful time and enjoyed her company, that of her friends, some great meals out,and of course, the theater. The thought that came to me at some point, filling me with happiness was that the only person I had to be responsible for in the bathroom was M-E. Again, what a pathetic thing to be excited about, let alone even notice.

In my new guidebook (Gail Sheehy's Passages for Caregivers, I became aware of a couple of things: first of all, I almost decided NOT to go away because I was concerned about Mom's getting cared for in the bathroom, even though my husband said he would be fine handling that. I then remembered Ms. Sheehy saying how common it is for caregivers to think no one else can handle things and how important it is to nurture ourselves in all of this time. Wow that is hard, just hard! More thoughts tomorrow or later today on some of the
things that the book has brought up for me. In the meantime, time to set up the bathroom so the hospice nurse can give Mom a shower. Later.........

I am not alone....

Who knew? I just happened to see a review of Gail Sheehy's new book: Passages in Caregiving. Many years ago I had loved her book called Passages that was a road map to growing up and changing in the 70's,I think.

The review itself had so many things that I could identify with about caregiving. I bought the book as soon as I could and have been reading it with a yellow highlighter. I am amazed that caregiving is a job that 1/3 of the population handles at this time. Yet it is not uncommon at all to feel alone in the job, to deny ourselves the joy in life, to not realize the options available to us. I feel validated and understood and that is HUGE! She also says that care-giving actually started in the early days when I was still working, and began to handle the checkbook, the grocery shopping, the doctor appointments and the pharmacy orders. I guess I didn't realize that was the beginning. I do remember a day at their doctor's when the nurse practitioner told me that she was glad I was there. I had driven them that day because Dad didn't want to drive. The nurse said that someone in the family needed to be present to know what was going on.She didn't think that either one of them remembered much when they left the office.

Yet later as things got complicated and more time consuming, I asked if there were any support groups for family members who were still working full time and there were none that the doctor's office knew about. The assisted living facility where Mom and Dad lived had no support group. When I asked the administrator about starting one, he said he would look into it, but he was fired before was able to do anything. The next administrator was no help, and neither was the next and I didn't even ask the next one. I couldn't keep up with all of it myself. It was shortly after that that we decided to move them in with us anyway.

This wonderful life-saving book has all kinds of suggestions and ideas and web sites and services. So in addition to saying "yes, this is huge and overwhelming, and important; I also get some ideas about where to turn for support and relief. I am sure I will write more...but this is enough for right now: Yay...someone knows me and says my feelings are valid.

A Love Letter to my Husband

When I first talked to my Dad about moving in with us, he told me that he had negative memories of his grandmother living with his family when he was a boy. He felt it had been hard on his mother and hard on his parent's marriage. My husband and I thought we would be able to handle this.

I have been married to Arnie for 40 years. We were a blind date, fixed up by our mothers. They said just to show him around Phoenix, I didn't have to marry him, but I never listened to my Mom. People often ask how we manage to stay married for so long in this day and age; my answer is, we over look alot of stuff! We also believe we will never meet each others' needs all of the time. "Some days chickie,some days feathers", a man who used to work for us said.

Anyway, if ever there was something that really made me see my husband, it has been these last few years of care giving. I could not do this without him;some days I can't do it with him. He was amazing with my father in his last weeks, getting up 2 or 3 times a night to change him and help him clean up. He shaved him and cut his toenails. He sat with him all night the last night of his life, because he wanted to be with him.

My Mom is still a very big presence every minute of everyday. My days are basically taken up by moving her from one chair to another, to the bathroom, making a meal, going to the bathroom;laundry, dishes, answering the phone, the door,(mostly in regard to her care giving staff). The times that I go out or do anything without a paid caregiver here are only possible because of my husband. He watches t.v. with my Mom, he cooks for her, he helps her to the bathroom and has even had to go through the changing of her soiled clothes and readying her for bed. Last night, he took the drain out of the sink at 11:30 because she thought she had broken her bridge and lost a tooth. (It turned out she did not,I was actually too tired to to try the bridge in her mouth to see if indeed, it was broken.)

He is actually more patient with her than I am. Although he turned 70 this year and is a cancer survivor, he has never begrudged the tremendous life-style change or lack of attention and companionship from me.

The other evening, on a rare night out,I asked him if he thought my Mom would live a lot longer and he answered that he hoped she would. I asked why and he said because he liked having her around and if she is not in pain and happy to be with us, then he hoped she had some good years left.

He goes into her room each night to tuck her in, give her a kiss and tell her he loves her. Honey, if you read this, I love you! You may act like a grumpy guy, but you are, at heart, just a sweet, loving man. I hope I can give you some good years too. I appreciate everything you do;caring for the animals, the garden, the groceries. You are the best. (And you still make me smile when I look at you!)