Moms progression has become very rapid again. She has begun having trouble breathing at night and her posture has started to retract. Shawn and I have been positioning mom in bed on her back at night to sleep. One. Reason for this is to spread out the weight across a larger surface area to help prevent bed sores. We've been very lucky so far not to have had any! Mom began sounding like she was gargling in her sleep which woke us up on several occasions. At one point she actually stopped breathing which was scary as hell...... We began using a small wedge to help elevate her into a better position for clearing do her airway; and have since had to increase to a very large wedge. That has begun to be no help either which is when I called her PCP. Moms O2 stats were dropping into the 80's at night. Her PCP diagnosed mom with obstructed sleep apena. She is no longer able to control her tongue and it is now blocking her airway at night causing lack of oxygen. Her PCP being a friend of mine said look Lisa....... There is nothing we can do and most patients never develop this as a side effect of Alzheimer's because they never make it this long. I know you don't want to hear this...... But it's time to call in hospice. I don't think it will be long.
She was right... That was the last thing I wanted to hear. But in reality I knew she was right, I needed to at least listen to them. So I called and organized a meeting with hospice to come to the house and meet with all of us (G, Shawnie, Teri, Arminda and myself) anyone that had skin in this game I wanted to be a part of this decision. This wasn't all going to be on my shoulders.
As to Not to draw out a long story....the meeting did not go well! The nurse that was sent was polite but a typical hospice nurse. I understand they become numb and serve a purpose but don't assume anything with mom or myself. She said that she considered mom mobile.... I guess that was because we rarely use a wheelchair and force her to move her legs (remember mom cannot walk or move on her own) how that is mobile I don't know. She said that the hospital bed wasn't an issue but since her O2 need was only at night that would likely not be approved. A CRNA would be assigned to mom to come once a week to shower her (when the time best fit into the CRNAs schedule; not moms schedule). Her PCP would no longer be calling the orders she would be informed of what the hospice Dr requested. And the straw that broke the camels back..... Mom would not be treated for anything that developed outside of the existing disease. Ex: the flu or a UTI
Listen I am not naive in this.... I understand I can not make her better, I understand thus disease will take her from us.... But what I will not do is sit back and do nothing! I will not agree to no treatment of common illnesses. I will be damned if I let mom die from the Flu....
So with that being said, we as a family (think they might have Been scared of me not to agree) decided now is not the time for hospice.
I meet with her PCP again in person and explained what occurred at the meting. She said ok.... Then let's keep doing what we are doing! So I went out and bought mom an adjustable base for her bed to replace the hospital bed option in hopes that if we find the right position she will not have the tongue issue while sleeping. O2 with her is not an option for several reasons. The chance of her getting wrapped in the cords, the fact she will likely not leave the mask or nasal cannula on and believe it or not Medicare will not cover it!
We converted the dinning room into a bedroom and moved mom in there. Pop moved in with us on 12/17. (Which was also the day dad passed 4 years ago). He needed the extra help and started to decline and not leave. His room when his friend PoPo passed away. Shawn and I have known that the time was getting closer but the decision was made pretty quickly.
So Teri now cares for both Mom and Pop......
Pop is easy Peary. Make him some toast, coffee and give him the paper to read and hum to and he is all set. He is still in good condition. He gets around on his own but is Mitch better off here. He and Shawn have been going to the gym together :) Pop rides the bike while Shawnie works out. Pop said to me yesterday, we are going to the gym to get our swell on.... I couldn't do anything but shake my head. Shawnie loves to have him around all the time now. And Pop loves to be with Shawn. To hell with me :)
I remind him .. I am the granddaughter. He is just by marriage! He says... Yeah but I like him better.
Have a said... I better have a pass to heaven! :)
I know this is a strange turn of events but honestly, I feel like this was the path I was meant to be on. There was a reason we never got pregnant.... And now I understand why! Of course back then I questioned it all the time.
He never gives you more than you can handle right? He sure has a lot of faith in us!
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