I was not planning on doing another page pertaining to Caregiving, but thanks to a special person I have met on here since my mother's passing, also a caregiver, who has encouraged me to "write from the heart", I thought I would try it in the way of this page. Thanks Gail...:):). When you care for someone whom you love, 24/7, you retain all sorts of memories and thoughts, some good, some bad, some troublesome...you feel protective, you feel helpless you feel such joy with the smallest things. Unless you are or have been a Caregiver I doubt that you can fully understand. The isolation, the stress, the burnout, all contribute to certain things sticking in your mind. Just the fact you are responsible for something SO precious... another person's life... leaves you vulnerable to a multitude of emotions. Instead of keeping them all bottled inside of me I decided to write about some of them........
My mother...in ICU the first time...her mind fully functioning, was the one who decided about her own life-saving. SHE decided to be put on life-support...and all of the Respiratory Therapists were willing to help with her rehabilitation...all but one. This lady hounded me every time we visited, she wanted us to "pull the plug". She tried to work on my guilt..."Your mother is SO tired"..."Your mother will not have any quality of life on this ventilator"...she just would NOT let up. She would check her machines and shake her head, she would almost smirk at us. My husband finally had to talk to the head ICU nurse to get her to leave us alone. The day of my mother's release she brought us our suction machine and some supplies, as I was going over osteo exercises with her physical therapist. This lady sneered at me and said "You don't need to worry... about all she will be good for is to pat dogs....she shouldn't be alive anyways." I did not say a word, I was only thankful my mother was in the bathroom and did not hear this. I wish I would have reported this at the time, but just had too many other things to think about. I felt BEYOND horrible at the total cruelty of this supposed medical professional. I heard complaints about her after that from other people and wished I would have said something about it at the time. She also did one of my mother's trach changes, if I would have known she was the only one working I would not have gone that day. You are supposed to lubricate the new trach before insertion...she did not...my mother flinched and jumped with pain as she wrenched the tube into her neck. My husband just got up and left the room, knowing with his temper it would be best. I have no idea what about my quiet mother invoked such hatred in her, all I can come up with is she was mad that she had to care for someone she felt was not worthy of life?? I do know if I ever run into her again I hope I am with someone who can make me turn...and walk away.
My mother only watched two tv channels...CNN and the Cooking Network. She had us and all her nurses addicted to Emeril Live(the chef), she would screw her face up with disgust at him when he was on and always say..."Oh I can't stand him, he's crazy"...yet would always make sure to switch over to him if she'd been watching CNN...:)....I think she secretly loved the guy...*L*
My new cd's I had ordered arrived. Two Marilyn Manson albums. My husband, who thinks I have lost it because I like his music..haha....took them in to show my mother. He said.."Look what your daughter is listening to"...and started showing her the covers. I mean, I know Marilyn looks a bit strange but to listen to those two ewwwwing and yucking....it was funny....and I am glad they found some humor in my choice of music...*LOL*.
Realizing how fragile my mother was I think really sank in one day we arrived at the hospital after she had been transferred to a ward. She was almost in tears; my heart broke seeing her. The nurse who got her up put her in one of those small plastic VERY uncomfortable chairs all hospital rooms have, instead of the high-backed cushioned one she had in her room...why?...I have NO idea...but because of her osteo and loss of weight due to being on life support for so long, her back and tail bone were excruciatingly sore by the time we arrived. They did not make sure she was in reach of her nurse's call button, they couldn't get the trach plug fastened so they just left it on the table, so she did not even have her voice. She said she had been sitting and trying to get someone's attention by banging on her table for over an hour. She also did not have a walker yet so she couldn't get up to go anywhere. How scared she must have felt, how undignified! How victimized! My husband was livid and left the room to find the nurse while I got her comfortable and plugged her trach. I wondered about all the posters all over the walls in the hospital proclaiming..."Treat the elderly with dignity". Guess they were there to fill wall space. I don't know what my husband said to her nurse but for the rest of her shift she was most attentive, and I vowed nothing like this would happen once we had her home. The elderly have enough to deal with and should not be treated in such a manner!
A couple of days after my mother's passing I was looking in one of my desk drawers for something. I found this paper I had stashed in there and had forgotten about. I read it and started crying; my husband asked what it was so I handed it to him and he read it. When my mom was first in ICU and on life support, the nurses gave her a clipboard and paper to write on. I had saved one. One of the nurses must have asked asked her if she was happy...she wrote "Im happy"...then later we had come and she wrote to us..."you don't have to come here all the time, this might be too hard on you". My husband wanted me to throw it away, but of course I did not. It is just one more reminder to me how unselfish, brave and caring my mother was.
I have been protective of my mother for many years now. She has not had an easy life...married late in life and had me when she was 41. Her attempts to have more children only resulted in miscarriages. She lived for years with a husband who left a lot to be desired in that department, and I think having my husband for support once we were married finally gave her the courage to leave. Being out on one's own at her age must have been scary, but she did it like she did most things, with quiet strength and much hard work. She was still working full time in her 60's; nights, baking in a bakery. Because she was so quiet, kind, and giving, even two of her own sisters took advantage of her...using her most of her life and then when she was too elderly to "do" for them anymore; they totally deserted her (I have totally disowned them as any relations of mine). And my father...I try to forgive because he IS my father, but it is hard. Even when she was so ill he would phone and just slam the receiver down as hard as he could if she answered and said I was unavailable. She would laugh about it but I knew deep down it bothered her; that they could never make peace. I secretly wished he would break his phone in a million pieces! After she passed away he offered us his cemetary plot for her, and insisted on buying a large bouquet of roses for her funeral.(feelings of guilt?) At the funeral home, we watched as he put some of the roses in with her, and touched her hand for a brief moment before joining us. I ruefully thought....too little.....too late.... Since her passing he is just not the same man. He is very quiet(as opposed to his overly large mouth), he sleeps a lot, and is so desolate; I feel this impending sense of...something? Another stroke in the making? Slipping down to the next plateau in his dementia? Finding solace once again in the bottle? I guess there is a big lesson to be learned here...NEVER put things off for it may be too late. If there is something you want to say to someone, or someone you need to work something out with....do it NOW!
One thing that still bothers me, and will probably for a long time...but I am working on it. Not being with my mother to the end. The hospital we took her to would not let us stay; if we could have gone to our regular hospital where they knew us we would have been allowed to...their emergency department is only open till 8 p.m. so I was forced to pick one of our other hospitals. To be honest I am not even sure I could have done this, but it would have been nice to have the option. Now I worry we let her down somehow...noone is sure as to what a person senses or doesn't sense when in a coma. What if she felt deserted? What if she was scared? I know I will have to work out all these feelings for myself. One thing that has helped me immensely was a letter I wrote to my mother a couple of days after she passed away; I had my husband put it with her at the viewing (I did not view). I decided I wanted to do this I think right after the call telling us she was gone. And one evening, a couple of days later I told him what I was going to do...and to just leave me alone for a while. I went to her room, still with all her things in it just the way we left it, and sat.....and thought. Finally the words came; and I wrote...and I wrote, tears spilling from my eyes. My husband did come to check on me a few times (he is much too protective of me..:)), but I assured him I was fine. I was going to just put in an envelope, seal it, and have it placed with her...but he asked if he could read it. I said yes...and left him alone to read. He told me later he didn't think he had ever cried so hard, and thanked me for signing his name to it too. He also asked if I minded him photocopying it, in case he ever felt the need to read it again. I told him to go ahead (anything to help him get through it all was okay with me). I know she has read it in her "other" life and is smiling....knowing how much we cared and how much it meant having her with us.
