Valerie
Active member
- Joined
- Sep 7, 2008
- Messages
- 89
- Reason
- Lost a loved one
- Country
- CA
- State
- Ontario
- City
- Kanata
It has been some time since I have written in. The fall has brought on may changes for Mom.At the beginning of September, she went for her PEG surgery. I don't know if she had a chance to ever fully recover from the procedure, anesthetic, hospital stay and bladder infection that followed. She left the hospital with a catheter to assist with her care (reduce toileting needs) and has had it since. She went from resting 2 hours a day to being in her wheelchair for only 2 hours a day. It all came about so quickly. It's hard to know why it all happened at the same time. Still, she doesn't regret having the PEG as she was really at the point of needing it to survive.
With these changes and that her care had already begun to exceed what my father was able to manage, we had to look at the next step. Home care support in the remote place where my parents lived was not possible. Living in a different province made her moving in with my family impossible too.
We were now looking at a palliative facility. We were blessed with a wonderful hospice within Quebec and only a half hour away from my sister, myself and many dear friends. It was a terribly fast decision and move that obviously had a big emotional impact on mom. This on top of her physical recovery made it all seem very grim. But, in true form Mom overcame the changes and found her bright spirit again and share it with the hospice staff with whom she has made strong relationships.
She has a wonderful new "home" where she is cared for with dignity and respect. She is again able to enjoy tub baths every few days. It had been a long time since that had happened. We too have been blessed to regain our family roles. My father chooses to travel back and forth each week, staying 3 nights with her. It seems to be more than he can handle as he has given his all for the last 2 1/2 years. This is a hard pill for my sister and I to swallow but our priority is Mom right now. She and I have sleepovers with Mom one night a week and visit as often as we can. With three young kids and activities, I feel very torn as to where I should be.
The weeks have had ups and downs. We have enjoyed two family birthdays together… Mom hosted from her bed in her bedroom. We all were able to celebrate together and even shared ice cream cake… this is about all Mom can take by mouth now… and very little at that.
Mom is no longer able to sit in her chair for more than 10 minutes. She has also begun to salivate so much when she is upright - or not even, that it causes choking. The staff are trying meeds to help her with this but they tend to dry her out so much - she prefers not take them. It has come to a lesser of two evils for a lot of things now. Somedays I'm not sure how she finds a smile. Most days she does though. She continues to be so strong and brave and wonderful.
Her choking spells can last for an hour or more. It looks like we have found a slight position change can alleviate this a bit… thank god. I feel so scared and helpless when she chokes but I can't imagine how she must feel! I never want her to leave but I don't want to suffer anymore. I'm afraid it will get much worse before she is lifted of this burden. I hate this disease!
Her hands are becoming less useful with each day. As this began, Mom hit her lowest point. She had always held onto "at least I have my hands". Her hands hold the little independence she still has. Once that ability is gone, I think that the sparkle she has managed to carry throughout this disease will also go. The twinkle is fading ever so slightly each day. It makes me sad.
My mom is my hero...
Thanks for listening to my disjointed story. I needed to connect with you again.
May tomorrow be a good day for us all.
With these changes and that her care had already begun to exceed what my father was able to manage, we had to look at the next step. Home care support in the remote place where my parents lived was not possible. Living in a different province made her moving in with my family impossible too.
We were now looking at a palliative facility. We were blessed with a wonderful hospice within Quebec and only a half hour away from my sister, myself and many dear friends. It was a terribly fast decision and move that obviously had a big emotional impact on mom. This on top of her physical recovery made it all seem very grim. But, in true form Mom overcame the changes and found her bright spirit again and share it with the hospice staff with whom she has made strong relationships.
She has a wonderful new "home" where she is cared for with dignity and respect. She is again able to enjoy tub baths every few days. It had been a long time since that had happened. We too have been blessed to regain our family roles. My father chooses to travel back and forth each week, staying 3 nights with her. It seems to be more than he can handle as he has given his all for the last 2 1/2 years. This is a hard pill for my sister and I to swallow but our priority is Mom right now. She and I have sleepovers with Mom one night a week and visit as often as we can. With three young kids and activities, I feel very torn as to where I should be.
The weeks have had ups and downs. We have enjoyed two family birthdays together… Mom hosted from her bed in her bedroom. We all were able to celebrate together and even shared ice cream cake… this is about all Mom can take by mouth now… and very little at that.
Mom is no longer able to sit in her chair for more than 10 minutes. She has also begun to salivate so much when she is upright - or not even, that it causes choking. The staff are trying meeds to help her with this but they tend to dry her out so much - she prefers not take them. It has come to a lesser of two evils for a lot of things now. Somedays I'm not sure how she finds a smile. Most days she does though. She continues to be so strong and brave and wonderful.
Her choking spells can last for an hour or more. It looks like we have found a slight position change can alleviate this a bit… thank god. I feel so scared and helpless when she chokes but I can't imagine how she must feel! I never want her to leave but I don't want to suffer anymore. I'm afraid it will get much worse before she is lifted of this burden. I hate this disease!
Her hands are becoming less useful with each day. As this began, Mom hit her lowest point. She had always held onto "at least I have my hands". Her hands hold the little independence she still has. Once that ability is gone, I think that the sparkle she has managed to carry throughout this disease will also go. The twinkle is fading ever so slightly each day. It makes me sad.
My mom is my hero...
Thanks for listening to my disjointed story. I needed to connect with you again.
May tomorrow be a good day for us all.
