December

So much has changed since my last post in August. I promise to try and be better about these updates in. The coming year.

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!

Mom's progression over the last 6 months has been gradual. As much as I want to call it a platue; I realize that a lot has changed. While being with mom day to day you don't always see the amount of change, but it's pretty dramatic.

Her mobility or lack thereof has become quite the challenge. At times even Shawn has a hard time moving her. You have to physically lift her from any sitting position. You always have to brace her for balance when she is on her feet. She will literally will fall backwards if you don't. In order to "walk" her from room to room; I have to brace her back against my chest, wrap my arms around her chest and push her movement forward. While I realize sometimes that being in a wheelchair might be easier for us to move her..... It is not what is best for mom. Any form of movement, even if it is being forced is better than no movement. We use a chair if we go places with any distance of walking. But going to dinner or food outings we try to avoid the wheelchair.
When she sits she leans to the side. Which side depends on the days ..... Some days it's to the left; others it's to the right. Not sure what that is about.... But it keeps us on her toes. The other day I left her sitting on the couch and went to change my clothes from work. I came back out and she had leaded so far to the left that she was face down into the couch cushion. But her butt was still forward where I had left it. Which also gives you a perspective of her mindset that she would have stayed there forever face first if I did not move her.

I spend a lot of time stuck in the house now since I can no longer lift her to get her in my car. Shawn has to be with us if we go anywhere. Otherwise we are stuck at the house. Shawn is do a lot of training right now for mountain bike racing so... He is not around a whole lot.
Of course we are grateful for the time he is home and the help he lends. His mom has also been helping step in taking care of mom. She comes and sits with her if we need a sitter or if Teri is off for the day. She even stayed over night last weekend so I could go with Shawn to one of his races.
Did I mention.... I have the best mother in-law.
She also goes Monday - Friday mornings to Pops place to get his day started. She wakes him up, gets him dressed in new clothes and gives him his medicine for the day. Then she takes him down to breakfast and sits with him and his buddies for a hr or so and has coffee with them. The drops Pop off at Exercise class. All Pops friends think he is so lucky. And so do I.... Arminda is an amazing person and is so good to him.

Teri is still a blessing in this journey. She is not just a caregiver for mom, she is a shoulder for me to lean on and FAMILY. We could not be where we are today without her! Mom loves spending time with her and treats her just like a daughter. She even tells her to Shut the Hell Up!

It amazes me, that she can not form words to talk/communicate with us anymore....but can still tell us off and knows when to roll her eyes! She is also still a nail bitter! OMG is she...... She can not keep her hands out of her mouth..... Gosh that is one thing I WISH she would forget :) that freaking sound is like nails on a chalk board!

We remodeled the bathroom this year to help with ease in showering for mom. While that was the best thing we have done..... Good lord shower time still stresses me the hell out! On weekends when I get mom out of bed and into the bathroom to have a shower, I can feel my anxiety go up. I am always scared to death that she is going to fall. We have a built in bench now, which helps a lot but she still has to stand in order to get her fully cleaned. Also we removed the tub and replaced with a walk in shower. Which still requires getting her to step up or lifting her onto the short slab of quartz to enter the shower. When we are done in the shower.... I myself need a shower to wash off all to sweat from stress. Mom is always so worn out each morning from the shower that she usually goes right back to sleep on the couch at least for an hr.

As much as I am aware of the sacrifice this journey has been for Shawn and I.... I would not change a thing. The decision to bring mom home and bring T into the house to care for her.... Is 100% the reason she is still alive. I truly believe that. I also feel strongly that I better get a pass to heaven :)

Mom took care of me for 36 years of my life..... The least I can do is take care of her during the time she has left. Don't get me wrong I am not always this positive or emotionally strong. I have days of where I reach my breaking point and just sit on the floor and cry. Many conversations have been had with dad, asking for help or guidance to get through the tough times. He always comes through.... Because the next day.... I always find it in me to do it all over again.

ALZHEIMER's SUCKS!!!!!!!!!!! It's sucks the life out of your loved ones. Mom knew this was going to happen. She knew. She also knew when it started to happen. She hid it for at least a year, before she sat me down and told me what was happening. I remember this conversation,like it was

yesterday. As much as I tried to convince her she was just over reacting and there was a reason that she was forgetting things. I knew that something was not right. She said to me when I can't take care of myself anymore, put me in a home and don't come back. While I said back then that won't ever happen.... I knew that she would eventually end up with me. When dad went into the hospital in the end.... I didn't think twice or ask Shawn's opinion. I moved her into my home. I am grateful for each and every second that I have with her. She may not know who I am anymore..... But I know who she is!