Good Morning to all, especially SherriT, Lisa48, VHCath and our Moderator.
I just returned yesterday from a week visit with my mom in Alberta. I thought of all the messages that come into this forum - while I was there. I was definitely in your shoes, those who are hands on caregiving, those who are struggling from a distance.
I had not seen my mom in over two years. Distance, financial reasons are the big ones - and altho I had not seen her, there was not a day that went by that I didnt think about her, wonder what she needed, what care she was getting etc.
I have just spent a week getting to watch my mom and her daily life. She is suffering from a form of dementia. She had a glimmer of recognition in her eyes when I arrived straight off the plane, after a long travel day - I went to see her as she was already tucked into bed...couldnt delay it til the next day. Enough time had passed.
The nurse who took me to Mom's room said, are you prepared? She will have changed a lot in the time you have not seen her. I nodded my head yes, but really I wasnt...even though I tried to prepare....it was a great shock to see the vacant look in her eyes, the faraway look that kept her from really communicating with me..but I was treated to a glimmer of recognition and a "look whos here!" comment.
Then I began to take it all in....the fact that Mom had a wonderful new room in a brand new facility which smelled fresh and clean...workmen still taking care of last minute concerns like security doors that still didnt stay locked...
But what hit me was the smell of urine. The very first thing I did was ask for cloths and a brief so I could change my mom. The staff member said, no I will do it, so I let her...she ran some water and came to mom's bedside. I was surprised when my mom flinched and said Oh its Cold! The staff member had run the water but not long enough to let it warm...and I was hurt...on behalf of my mom. I commented on it...and I am sure she will remember next time.
I told the charge nurse....and she said I need to put a note in my moms room reminding them to wash her with warm water, to change her when there is a noticeable odour, and all the specifics of her care! Really????
Its common sense. Anyone who has had children, or cared for anyone with personal needs should know that you dont use cold water, you dont leave them dirty...but on the other hand...I am a caregiver with PSW years of experience behind me.
I saw it happen again, my mom laid down in her bed for the afternoon, gotten up for supper...and I know that at times she was not changed...because her brief was not at the required percentage. That upsets me. That hurts me. That affects my mom, her skin integrity, her personal pride and dignity.
I can leave all the notes I want, but things will carry on the way they were. While I was in Mom's room every day, I noted that the smell in the room was much improved, meaning she was getting the changes she needed.
I came home with much sadness...after watching my mom refuse meals, refuse drinks, refuse meds. She is skin and bone. She is not going to recover. She is basically at the palliative state. She is locked into a sitting position. She cannot straighten out her legs easily when she lays down after sitting up in her wheel chair. She wears a safety belt to contain her in her chair after several falls in the past year and a half
She just wants to die. She has given up. She cant connect with us in the real world anymore. But I did see her react to me, cry tears from her eyes silently after I told her I had to return home. That broke my heart.
So for all of you who have family at a distance...I do understand the pain involved, the worry, the concern, the umbilical cord that keeps us connected even after we are born and grown....we still have a connection to our parents.
I found out that in Alberta only one bath a week is allowed...in Ontario we give residents two per week. I had to advocate for my mom in that she was having difficulty eating some foods...so asked for her meat to be minced to make it easier to spoon into her mouth. She refuses to be fed, but can barely get a spoon of food to her mouth without dropping it, as she is shaking so badly and cannot coordinate the movement to her mouth.
This is the life of my mom now. I am saddened to think that she cannot enjoy the lovely private room she now has, with a garden and pathways outside she will never walk or appreciate the view of. She cannot sit up or climb out of bed, she is too weak. She is essentially skin and bone. 87 lbs. Most of her life she was a trim lady about 130 lbs. Her hair is a mess...it gets cut every 5 or 6 weeks but just lays flat against her scalp. My mom has no close family to visit her daily - to ensure that her room doesnt smell like urine. We do have a contact that will visit her every few weeks but its just not enough really.
But, I have to remember, Mom decided to stay in this location, live out her senior years amongst friends and people she knew, doctor, dentist, hairdresser, shops she knew how to get to...etc. She worked in long term care caring for others til she was about 68 yrs old. Now she is 88 yrs old...and very alone. But it was her choice to live there.
I am doing the best I can...I did what I could while I was there...I did get connected with an advocate from the Govt. Health care, who becomse part of the team approach to the elder care in Alberta. For that I am very grateful.
Sorry this was so long. I have done a lot of crying over the past few days...and now that I am back home...I have to realize that I cannot do it all. I cannot be in two different places at once. I have to hope that other advocates will help me care from a distance.
You all are in my thoughts today, as we all share the same burden.
Thanks for listening.
I also got some video clips of my mom that concerned me. She was rambling but still I was impressed that she seemed concerned, worried, and basically she told me "This is no place to come and die". I couldnt get her to repeat it on video, but she said it. I dont believe she was just talking, I believe she was saying her thoughts.
But I am doing the best I can...and wishing it was more.
I think that is the biggest thing we have to deal with is the Overwhelming guilt that we cannot do more, be there for both parents and children.
NatR