I even use different Blood Pressure monitors on her in an attempt to see if the one I use on her was broken. It's not. My mom's blood pressure is wacky and we are beginning to believe that the wild fluctuations are being caused by Lewy Bodies attacking her autonomic system.
My mom has good days which are breaths of fresh air that restore my hope. During the good times I am able to rest and I can handle the stresses of care giving and all the craziness that comes with it. However, we have been having more not so good days since my mom's ER visit and overnight hospital stay.
Night disturbances with a flavor of fear of being abandoned are the antagonist in the new phase of my mom's illness. A year or so ago my mom had night disturbances worse than she's experiencing today; regardless, any night disturbance is a drain of my patience.
Yesterday, I woke up to my mom fully dressed, clomping around in her heavy shoes, trying to find her way home at 5am. I was tired. I had my own bout with insomnia and felt like I had just fallen to sleep when my mom woke me up in a panic.
"How do I get out of here?!" Are the words that my mom greeted me with, as I reached the top of the stairs.
Our day was not starting out very well and it only got worse. Blood Pressures were back in the 200 range. I was able to get it down to 160/68 just once during the day, but that was short lived. I cried. I cried a lot.
My blood pressure was up there to the point where I actually had a headache. I rarely get headaches. I was having hot flashes, another phenomenon that I rarely experience during the day. I cried.
My mom's blood pressure went up and up. The more I cried the higher her pressure rose. I cried more. I felt lost and out of control. I didn't want to be a care giver anymore. I was done. I cried.
I ate celery. Lots of celery. I even attempted to get my mom on Wii Fit, using the balance games to give her something to keep her eyes focused on something other than the trees outside. Trees where she often sees visions of my dad, my brother, her miscarried baby (she named him Dennis) and an assortment of people that she had known throughout her life.
"Oh, there's Angie Matolla!" She squealed at one point.
"Bob Brest's wife! She is blaming me for things, she's talking bad about me. I didn't do it!" She proclaimed moments later, becoming upset, raising her blood pressure into the 200's faster than a formula race car can go from zero to one hundred MPH.
My attitude and mood affect my mom's blood pressure. If I'm stressed out, which I am, my pressure goes up easily and in turn, my mom's does too. It's a vicious cycle. I feel like I'm back where I was before I had help coming in to our home and before my mom was acclimated with "school."
Mom is missing school. She is insisting on going back on Tuesday this week, she calls it "Kindergarten" and she wants to go back. She had fun and the stimulation definitely helped to keep her in a happy mood.
Personally, I struggle with letting go and knowing when it's time to have my mom committed to a nursing home. I worry about her going to a home; I worry that they'll drug her to keep her quiet. I worry that the home doesn't understand Lewy and will give her anti-psychotics that send her deeper into the grips of her mental illness.
I am struggling. Part of me wants to let go but a bigger part of me won't allow me to do it, not yet. When I'm rested, like I am today, I feel that I can keep going and fighting back Lewy, giving my mom just one more good day before the end.
Care Givers who have had to make this decision tell me that "I'll know" when the the time is right, when I will know it's time to move her to a nursing facility. I love my mom and letting go is difficult; I feel like I will have failed if I quit on her.
I have turned my tears into prayer, each tear drop I shed, I pray a little prayer, asking God, the Universe and any supreme being that will listen, to give me the strength to get through my mom's end days with peace and grace.
Letting go.... when do I know it's time?
Posts
i wish i had an answer for you... its an unbelievably impossible decision.
ReplyDeleteI don't think there is any right or wrong answer to that. It's a terrible dilemma.
ReplyDeleteI do want to say this, though. Through your truly astounding dedication, research, wading through the sheer exhaustion of all of it, your love for your mom has given her VASTLY more light and love and life than she would have had without you.
There is not even a word for the degree of blessed gift you have given her. Your mind bogglingly selfless persistence and desire to bring her health and happiness has been just astounding to see, even from the tiny little portal of your blog posts.
I truly believe that you have already done more than anyone can imagine. I think it is clear that mom is "going there" anyway: you, however, have staved it off as long as possible, in fact vastly longer than anybody or any doctor would have dreamed possible, and made all of it in the meantime as good for her as possible. It's been nothing short of a miracle in the meantime.
But to everything there is a season, as they say. Sometimes, it is true that people in rest homes get much worse and pass away vastly more quickly as well; how do you know that is not what their soul actually *wants* at that point? Maybe they are ready to go. Maybe that is part of why they see so many people who are not in our world anymore: because they are ALREADY half in the next one, and having a heck of a hard time riding the border between the two.
There is another question, which in your altruistic love you haven't voiced here that I've noticed. And that is: you have to live too, and be happy; and your husband. How much of your lives can be sacrificed to try and stave off the inevitable, to try and keep someone in this world who might be ready to go on to the next? You matter, too. If she were watching from a future heaven, would she want you to have the kind of life, that you would want for her?
PJ
@Slyde... it's an understatement with how difficult this decision can be to make.
ReplyDelete@PJ ... you are right, I do need to think of myself and my husband - easier said than done. My mom has clear days, during these days I feel that I need to keep her with me to give her a few more good days outside a facility.
My mom and I talked years ago and again yesterday, when she starts to crap her pants, she will go to a home.
Yesterday we had a phenomenal day. I will write today's blog post about it - Cordyceps mushrooms have brought life back to my mom.
@ PJ... one more thing, THANK YOU for your well thought out comment. I appreciate your opinion as I do all of my readers. Thank you.
ReplyDeleteI totally agree with PJ.
ReplyDeleteYou sound like a mother who is not ready to let her child fly away...
What happens if something happens to you? It will be more and more difficult if you are not well, tired all the time.
Your worry is that you don't trust others. Or do you?
How about telling people how to take care of your mother, what you've found out etc. Or are they able to treat people without listening you? What kind of rights you have what kind of medicine given, what food not to give her etc.?
You shouldn't worry something if you don't KNOW is true.
Worrying is waste of life.
Better to know and make wise decisions.
I know - it's not easy.
Try to be good to yourself...and your husband.
@ blogitse... thank you for your comment.
ReplyDeleteIt's complicated. My mom is on all natural remedies, something that isn't an accepted form of treatment in the US; drugs are believed to be the only answer by medical professionals.
Of course I don't agree, I've seen the results of both, pharma drugs and natural remedies. Pharma drugs make my mom sicker.
I'm not afraid to leave my mom with anyone.
She will go back to "school" tomorrow. Day care helps her a lot ... me too. She hasn't been in over a month and I believe this is creating stress in my life and conversely into my mom's life.
I do worry about nursing facilities.
With this being said, I have found my mom a nursing home; the plan is for her to live in the same home as her brother. My cousin found a very nice home with NO elevator. I will get her on the list so that when the time comes, a bed will be ready for her.
I am good to myself and my husband; of course we can all be better with this aspect of life. We do what we can.
You are right... I should not worry about something I have no control, that's why I am doing my homework and preparing for the day when my mom has to move to a nursing facility.
I am ready for her to fly away, I just don't want to hear her cries and screams; nothing is so painful as to see ones parent suffering. I'd prefer to have her go to sleep one night and not wake up... going in peace is what I wish for everyone.
So... it is not an easy decision. I do know that I can only make it when I am rested and not full of emotion.