Hospice begins for my Mom, tomorrow.

[Scruffy Rumbler]

I am having trouble seeing this as the tears flood done my face. My sister and I have been her guardians and caregivers since July of 2010. Horrible actions taken by family members led us to secure court guardianship that year and my partner and I moved from the west coast back to the east coast, bought a two family home for the four of us.

Mom has senile dementia: possible Alzheimer's. She was diagnosed years ago. When we moved back, she still knew I was her son , after telling her my name.

For years she passed off having forgotten names as bad eye sight...she does have macular degeneration. When we moved back, she had loss the sight in her rt eye due to carelessness on the part her former caregiver.... her own daughter. Our big fear was she would go completely blind before she dies. That was a question she asked me on the way to her eye doctors, "What if I go blind before?" She never said before what. It was one of those moments in the life of dementia when a glimpse of her old self came out. And she sounded scared....like a kid. All I could do was hold her hand, assure her that THAT was not going to happen, and if it did we would be there. That was last summer. She still has peripheral vision in the left eye. She makes jokes about it and squints, making funny faces. Today she can barely open them, and when she does, she can still see.

For a year or so, when I would drop in, The conversation went like this...
ME: "Hi, Mom! It's me, *****."
Mom: "Oh!, Hi *****. You're my son, *****? Right?"
ME: "Yup, That's me!"
Mom: eyeing my 6' , 250lb body "I gave birth to you?!? Ow ow ouch!"

Then there are the hugs. I am tall, she no longer is. I stand straight, she is almost bent double. Most people, she ends up hugging their hips. Her and me... we got it down. or rather up...When she says yes to a hug, she stands, I kneel in front of her with my arms out, I prompt her to put her arms on my shoulders. My head lays at her breast, her head rests on mine, her hand caresses my hair. With my arms gently supporting her, she can settle into a position supported on my shoulders and we time travel, I am 5 and she is 35, I am two and she is 32, I am 50 and she is 80. I let her be the first to pull back. Some times she is done quickly. A little slap on the shoulder... "you can go home now!" Sometime she lingers...humming in my ear. I pretend to fall asleep and snore. I can hear her laughter through her chest, deep and motherly. "Oh poor baby, we need to get you a bed!" other times" That's right.... you just sleep right there."


Last week after visiting, I was tending the flower pots on her front porch when she asked my sister who that nice fellow was. My sister called me by her son's name... the look on her face when said "I think my name is*****".

This week she is having bouts of DEEP sleep, the kind you cannot rouse her from. She wakes up with a start, eyes pop open, try to focus on who is in the room...goes back to sleep. I want to tell her she can go.... but I can't. My brother evicted her 4 years ago. He doesn't think she was aware at the time. Last month as she was leaving the hospital after a brief stay, she asked my sister if they were being kicked out of her home again. I cried again and privately raged again at what he did to her, my sisters and myself. And now, I want to tell my mommy she can go and we will be ok...but I can't...not yet not in such straight forward words as that. The way will come.

So tonight I wait.... hoping I'll sleep better tonight. Tomorrow's list, contact our funeral home and let him know (and seriously check to make sure he is still alive. He is older than my mom), shop for a headstone, contact her burial trust for info. oh and be back by one for hospice.

Hospice begins for my Mom, tomorrow. I am sad.

[CaliforniaPeggy]

1. You are doing such a beautiful thing, my dear Scruffy Rumbler...

You need to realize that what you are doing is BEAUTIFUL. Of course, you're sad. Your mom is dying. But you're taking care of her, and how lucky you both are to be together at such a time.

Be good to yourself...

[Scruffy Rumbler]

5. Thank you, CaliforniaPeggy.

Your words comfort me.

[LoisB]

2. My heart goes out to you. You are a wonderful son. Try to always remember

when she was herself.

[Scruffy Rumbler]

6. I will LoisB.

She had many amazing adventures in her life. I was lucky to share more than a few.

[Hoyt]

3. Very sorry. . . . . . .

[Scruffy Rumbler]

7. Thank you, Hoyt. n/t

[shireen]

4. love to you, mom, spouse, and sister ….

Your mom is very fortunate to have such wonderful loving people in her life. I'm so glad you were able to rescue her from a bad situation.

[Scruffy Rumbler]

8. Thanks, shireen.

[orleans]

9. such a heartwrenching time for you

the heartache of saying goodbye for now
the stress of the day to day and the future
i'm so sorry you have entered this era in your life because i know how hard it can be.
i'm glad you have your partner you can lean on.

a couple days have passed since your last post. i'm wondering how everything is going for you and your mom.

i remember telling my mom she was going to be able to see her parents again, and her sister, and my dad. i remember telling my mom that i just wanted to let her know that it was okay to let go (hardest words i've ever spoken). and i remember telling her that even though i didn't know how i was going to do it that i was going to find her again someday. she asked me if i really thought so and i said absolutely. she seemed to be comforted and reassured when i told her we wouldn't be apart forever. (the most private & personal of conversations, the deathbed conversation, and yet i post it online--and i've written about it before in this forum. i guess i share it because speaking to my dad like that when he was dying never occurred to me and, in retrospect, i wish it had.)

there will be a time when your mom, once again, knows your name with absolute certainty without having to be reminded or told. and she will know about everything you did for her. and she will stand straight and strong and put her arms around you as you cry. and maybe, deep down inside, you will know she is near, loving you as she always did, and telling you it's okay--that everything is okay. our crazy bodies wear out and stop but love doesn't die--we take it with us to the other side.

(i feel like i should qualify that last paragraph by saying it is just my belief, so i will. but it's a belief that stems from numerous personal experiences.)

wishing your family much peace and love.

[Scruffy Rumbler]

10. orleans,

I returned from sitting with Mom, only to find your thoughtful post. Thank you for opening your heart and sharing your story.

We are settling in with the new reality. My sister's daughter is in from Maine. She is an intelligent and caring young woman, takes after her grandmother and namesake. Helping Sis get the house together, offer support and be a buffer with others.

Our appointment with our hospice nurse went very well. He was kind and caring. He was very thorough. Sis and I have both been honored to be with different family members when they passed. I held my mother's mother as she took her last breath. I had with her, as you so aptly put it, the most private & personal of conversations, the deathbed conversation. My sister cared for her in laws in their final time. We are both so grateful for those and other experiences. They have given us a rather strong foundation to face this from. Our nurse was somewhat taken aback by our knowledgeable welcoming of him and his services into our home.

Yesterday I made contact with a long time friend of my mother's. She and Mom worked together on a mental health unit back in the day. She is now a clergy person and has worked with our hospice in the past. The synergy of her coming back into our life 4 years ago and her knowledge of my mother during a large portion of her life brings me great comfort. When the time comes, I feel she will speak my mother's life with honesty and compassion.

I like to think that all the stars are campfires. And when we die, we get our own hearth. And around that hearth, all those that went before us will gather and greet us.

A little story inspired by your phrase our crazy bodies wear out. My mother has a tattoo. She had it placed where she did, on the inside of her ankle, as part of her aging plan. When asked why she had it placed there, she explained that as a nurse and having worked with many elderly, she noticed that no matter how bent she may become as she aged, she would always be able to see the inside of her ankle... That's my Mom, practical and cutting edge!

[orleans]

11. it seems like everything is going very well under the circumstances

and that is nice to know.

i have heard wonderful things about hospice workers and the care that is taken with the families they assist. (my mother & i never reached that point--by the time her doctors finally agreed to let my mom do hospice--since they thought she had over six months to live and therefore wasn't qualified--we scheduled her to come home a week later on my birthday. as it turned out i brought her ashes home on my birthday.)

i smiled when i read the rationale for your mom's ankle tattoo--boy, that was really figuring things out, wasn't it?

thank you for sharing that idea about the stars being like campfires. i've never heard that before and the imagery that it creates is beautiful. i hope i always remember that.

take good care.