Sorry it has been so long since my last post. I have been so busy with travel, kids and Mom. As I said before, no news is good news; and Mom has been doing great. A year ago, we were told Mom had 6-12 months left, but plan closer to the 6 months. Now, 1 year later, doctors are amazed at Mom's health. She is doing better than she was a year ago. They are attributing that to the strict care that Tanya and I are giving to Mom.
This has been very difficult for all three of us, since Mom is an independent woman, night owl, and foodie. There are many looking from the outside, who have thought that Tanya and I are harsh and too strict with enforcing Mom's diet and schedule. They don't understand that Mom's mental capacity has become like a little child - yet she doesn't even realize it herself. Her temperament and attitude also have changed (people with liver disease get very mean and stubborn), yet she doesn't behave that way around others; so people don't understand the situations we experience "behind the scenes" of what they see.
The results of our tough love, are that Mom is alive, not bedridden, and doing better than she was a year ago. She is able to travel, visit with people she loves, and finish life long goals. We have been able to have her with us longer than the doctors thought possible. Unfortunately, it also means a lot of fighting and heartache to keep her on track. Tanya nor I want to fight with her, but were willing to do what the doctor asked us to, to keep her healthy and alive.
When the doctor told Mom that due to our strict care, she now could live 2-3 years or more - this did not make Mom happy. She did not want to live that long if she had to stay on a schedule and specific diet. After much discussion and heartache, she has informed her doctor that she wants him to do all he can to keep her alive and mobile as long as possible; however, she is going to take back her control of eating what she wants, having her own sleeping schedule, etc. The doctor was heartbroken and told her that she didn't have the mental clarity anymore to make her own decisions wisely, and it was a mistake that would come with severe consequences. He also told her that he didn't feel that she should be making this decision due to the confusion and mental incapacity's that she experiences which come with the disease (she has memory loss, no sense of time, confusion, etc - but doesn't realize the extent of it herself), but that he had to leave that up her.
She says that depending on how it goes, she may go back to having Tanya and I control her schedule and diet again; but she will decide that. She has decided that when she becomes bedridden from her choices, that she wants us to put her in a nursing home for the last little bit of her life.
It will be hard for Tanya and I to watch this, since we know that some of her wrong choices will be from lack of will power, while others will be due to lack of understanding (confusion). While I am heartbroken that she will shorten her time with us, I also feel that I would rather have 3 months of enjoying her, than 3 years of fighting with her. I wish I could have 3 years of her making the right choices on her own, keeping her quality of health and quantity of time - but I have to respect her wishes and choices.
Since she still wants the doctors to do all they can, we will still have trips to San Francisco, scans, treatments, etc. She also wants to have surgery on her knee to remove that screw that is too long, which now causes her a lot of pain since there is no muscle, just skin rubbing against the screw on either side.
This has been a very difficult post for me, as I am NOT eloquent of speech or pen, and always seem to put my foot in my mouth, and offend without any desire or intention to do so. It is such a touchy situation, and I mean no disrespect to my Mother, whom I love dearly. I hope I have relayed the information in a sensitive way, with all the love I have for her. One day I hope to have time to post the light and cute things my children do and say. For example, the other day Emmie asked Esther what her favorite color was, and Esther said "Pink". Emmie then asked what her other favorite color was, to which Esther replied "darker pink". I love my Mom, my kidlings, and my husband!
1 comment:
Debbie, I sympathize with your situation. I wish I lived closer to you so I could help out. I understand how stressful it can be to care for the ill. I hope your mom knows how much you do, and at least knows that your strictness comes from a loving place. Tough love is hard, but so necessary. Hang in there. Also, I think its totally understandable that you would rather have 3 happy months than 3 difficult years. And I think that you wrote your feelings out very clearly and thoughtfully :) I wouldnt worry about anyone who would be offended because no one knows what its like to be in your shoes everyday. I love you! Miss you TONS!
-Crystal
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