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!

3 Months

I can't believe it has been 3 months since I last posted. Sorry!

I am a believer in no news nowadays being good news. My last update was more about me than mom, and I am happy to report that the physicians feel my issues are stress related. Not much I can do to change the situation, just need to try and balance life a little better.

Mom is still declining, I keep hoping for that platue again but it doesn't seem to happen. She is having a lot more difficulty walking on her own, especially when she is tired at all. She forgets to move her feet, so the waist up move and the feet remain planted. Which never makes for a good result.

She is gaining weight again, so we need to cut back on the Dairy Queen milkshake runs :) I am glad the weight is the now because I know that it will help in the long run, when she can no longer eat. But the issue is with the increase in weight she is harder to miniver. She requires lifting into bed and on and off the couch.

I've said this May times though that process, Shawn is a true blessing. He helps in every aspect of taking care of mom. He helps me with showers, feeding sand toileting. If it wasn't for him.... I could not do this on my own. I am truly blessed to have him! He has the patience with mom and pop like I've never seen. Now I just need to work on his patience with everything else :)

I have removed all medication for mom other than what is required to help her live (BP, blood thinner etc). No more medication for mood, Alzheimer's or appetite increases. There is no reason to continue this at this stage of the disease. Her Dr's supported my decision and were actually glad. Her Neurologist and PCP both feel that it is time for Hospice to be called in, but I am not in agreement yet! I am 100% familiar with what hospice can offer us and mom. Hospice was there for dad in the end am I am forever great full. Between, Shawn- Teri and myself, I feel like we are doing ok. We have found a weekend sitter that use to work with me that is now sitting with mom on occasional weekends. So that is an extra relief. I don't want to call in Hospice until she is bed ridden. Hospice only has so many slots available at a time, I don't want to take that opportunity away from someone else that really needs the help.

Mom is not mom anymore, she doesn't respond to mom... I have to call her by Georgiana in order to get her attention. She waves and talks to the lady In the mirror when we enter and leave the bathroom. She calls out to her brothers and sisters a lot and occasionally to dad. She calls me mom sometimes. I just saw, no... I'm Lisa but I guess in reality I am mom.
She is pretty quite all day and then when the clock strikes 3:00.... Holy shit! She is balls to the wall.... She talks non stop until we give her the Dream Water and out huer in bed. The talking is more like gibberish.... You can not really understand what she is saying other than the cuss words. Those are always clear :) I am great flu for each and everyday that I have with her! She was always my best friend and still is. I promised her that I would always take care of her and I will until the end.

Shawn and I stopped by and saw my parents neighbors Be picky and Charlie. I think they were in shock in regards to moms progression. They were always so good to mom and dad, it was nice to see them.

I got to go away last weekend for a couple of days to a concert and recharge. It was nice, Shawn and G took turns sitting with mom and pop.

Pop fell last week on Monday in his apartment and the lady that comes in (private pay) found him on the floor. He had been there all day! He is in independent living, so they do not go into their rooms on a regular basis. They just cook and clean for them. The medication reminder is a service that is separate from the facility. Thank goodness she actually went early that Monday. I think he actually feel on Sunday night while getting ready for bed. I rushed over and picked him up and brought him back to my house with us. Shawn and I took him to the Dr on Tuesday last week and they had to change his BP meds. His BP was dropping too low when he gets up from a sitting or laying position.
He stayed with us for a week, until I felt like he was more stable and the medication change was
helping. He is doing much better now!

Life is a daily adventure now! More to come

Decreasing Strength

Over the last week and a half moms ability to stand, walk or move her left side has been decreased.
I'm not sure if she is just tired and not sleeping well at night or if she is losing her ability to control that side.

That is the side that the stroke effected, but it seems worse to me over the last week or so.

On Saturday Shawn was walking around the house with her and he always stands more to her left since that is her weak side. Well she stepped back-wards and crossed her feet and went down toward her right. He was not able to catch her fast enough and they both went down.

Shawn broke her fall since she landed on top of him and she never stopped talking all the way down or after impact. I was in the kitchen and came running over to help both of them up. Shawn hurt his back (which has been an issue for about 10 years) and pulled his groin.

He took him time getting up, due to being so sore. Pop was sitting on the couch and leaded over and said .. Shawn are you hurt? I'll be ok Pop.... Don't worry.


Saturday night while we were sitting down to eat dinner, I didn't feel well. I felt like my heart was racing and I could not catch my breath. I said something to Shawn and he used the Pulse Ox machine that we had for dad. He checked my pulse and it was 102 resting. The look on his face was concern, but he said woman calm down... Your broken.
I tried the rest of the night to relax, even took a bath.
We went to bed around mid-night and 27 minutes later I was back up again from my heart feeling like it was going to beat out of my chest.
He again checked my pulse and it was now 125, from sleeping.

He said OK... Call your brother we are going to the hospital. So G came over and we drove to the ER and was rushed back and hooked up to an EKG machine within 5 minutes of getting to the ER.

All said and done. I was not having a heart attack or a stroke, but there was no real explanation to what was causing this irregular heart rate.
They did all kinds of blood work and did find that my potassium was low for some unknown reason.
They hung a bag of fluids in case I was dehydrated and also gave me two doses of potassium.

The nurse I had was so nice and funny, she helped relax me which I needed. When she said that I need to take a horse pill for the potassium, Shawn and I both laughed. I said can you cut it up into 4 pieces. She said Negative Ghost Rider.. I said then we have a problem. I have trouble getting Tylenol down... I can not swallow that...
She got me liquid and warned me that it tasted awful, but I had no choice.. I could not get that pill down.

Shawn and I came home around 5 hrs later with orders to follow up with my PCP. Which is also moms PCP and a Friend of mine.
I called her and of course she thought I was going to say mom was in the ER.. She said you! at least 5 times.
Women listen to me.. I am broken fix me....

I go in and see her on Wednesday, she has already called in a order for me to start (Short term) which seems to be helping slow down my heart rate. It is down into the 80's and I feel semi-normal again.

I will keep you all updated.

When it rains it pours! Pop was so upset, he said to me at least a dozen times... I cant lose you...
Broke my heart!


Today is Tuesday 3/3/15 and mom actually had good afternoon. Terri took her for a good long walk.
I tell you... That girl is a true blessing to us all.

I think I am going to start adding photos to the blog on the next post. It will be nice for you all to see mom.

Sally, Dickie, Lizzy and Fred :)

Mom has been talking a lot and her eyes are more clear than they have been in a year. I thought it was just me grasping at any sign of normalcy, but even Teri said the same thing about the eyes.

I am really beginning to think that fall really did shake some plaque lose :)

She's been yelling at me a lot this past week and keeps calling me Sally or Lizzy, again usually when I am making her do something that she doesn't want to do... I can only imagine what it was like when they were young.

Nothing eventful to report this week, but I am 100% Ok with that.. The last few have been packed to the max emotionally.

What is that saying : No news is good news! Well I have no new news.

She has really been good this past week. She slept well (seemed rested) the diet is still going well and she is keeping everything down (fingers always crossed-- My carpets and poor Teri's car can't take any more), She is very verbal and is back up and walking.

Since no news to report, thought I would share a few recent stories:

*** Shawn does not read this blog... So don't ever mention this story as he was not as amused as I was........

Each and every night Shawn helps me get mom ready for bed and actually helps me put her in the bed. The other night I had gotten her off the toilet and was cleaning her up, Shawn was standing in front of her helping hold her still. I was placing steroid cream on her back, so he was holding the top of her shirt up in the back. His hands were "tied up". He yells.... Hey..... ! Lady this is not Jerry Springer..
I said, what the hell are you talking about... He yelled again, Hey!....
I looked down and mom was cup checking him over and over... :)
I died laughing... He was not so amused.


Here is another one for the road...
Shawn, mom and I were all in the car on Sunday night taking Pop home. Mom sometimes yells for no reason and pop has learned at this point to ignore it. But Sunday night the car was completely quite, we were sitting at a light, the radio was low and mom yells.... Suck my Ass...
Shawn and I tried to ignore it and act like it didn't happen. I was honestly hoping that pops selective hearing was kicking at that moment.... But I was not so lucky.. Pop says .. Did says from the back seat, did she just say what I think she said? Shawn says Yup!
Pop said .. Ok then.. That's a new one...
I laughed so loud I snorted....


Never a Dull Moment.

Two weeks of a whirl-wind

First.... Sorry I've failed already.

It's been two weeks since my last post :(

I am happy to report that mom has not vomited since we visited the GI doctor more than two weeks ago. The little change to her food preparation has made all the difference.
We now grind/chop up her food for her before feeding it to her. I have to plan ahead when we go out to dinner, but anything is better than it was.

Mom fell two Thursday's ago in the bathroom when I got her off the Toilet. I bent down to pull up her underwire and she feel straight back. She slammed into the tank on the toilet with her upper shoulder and lower back. The tank shattered dumping all of the water onto the floor and the pipe broke off behind the Toilet. I pulled mom from being logged in between the toilet and the wall, onto the floor. Then I had to drag her across the floor into the hallway getting her proper against the wall. Then run back into the bathroom to shut the water off from the gushing pipe. I called Gary and yelled at him to get his ass to my house NOW. I didn't even tell him why, I just hung up.
He was pulling in the driveway in less than 10 minutes. I ran out to met him and told him all in one breathe what happened. He came inside and helped me lift mom and get her set up on the couch. He said to me, you need to calm down stay with mom and I will clean up the bathroom. I said ok.... That only lasted a hot minute before he came out bleeding from the porcelain slicing his hand.
Really.....! What else....
Shawn walked in the house with no clue what had happened. He said what? I said I have to talk to you, taking him into the bathroom. He still didn't notice their was no longer a toilet. I told him what happened and the first words we're is she ok. I explained that she did not hit her head, she hit her shoulder and back.
His medical side kicked in and he came out and checked her out, moving her shoulder and elbow.
After he was sure she was ok, he turned to me and said.... If you wanted a new toilet all you had to do was say so. You didn't have to throw mom into it to get one :)
$365 later, we now have a newly installed toilet that we all hate!  Toilets are not cheap!
Beginning that night, mom has not stopped talking. The words do not make sense, but she is talking up a storm again. Shawn says that I must have knocked some plaque lose :)

Pop had a tooth extracted on Monday this week. He has some needling from the pull, so we decided to just keep him with us all week. Terri has kept him busy with activities and kept an eye on him as well.

Wednesday our cat Bob (the one with no tail) was attacked and killed in our backyard. We are not sure if it was the two dogs running lose in the neighborhood, or something else. She was only outside for about 3 hrs, before I found her. She went outside all the time! Animal Control came yesterday and finished their investigation, so we buried her last night.

It's been a hell of a few weeks!

Two Dr Visits in Two Days 1/13/15 (Vomit Talk)

As I stated in my last post, one of the issues that mom has been experiencing is vomiting. I mean a lot of it!
Over the last week mom has had 4 days with vomiting episodes. She vomits until she empties everything in her stomach.
We have talked to her PCP and her Neurologist about this issue in the past, but that was back when it happened maybe once every 6 weeks or so. They had no explanation and really no concern at that time.
Terri tried to track everything that mom was eating so that maybe we could determine was there a pattern or was it something particular that she was eating. I was convinced that it was Ensure overload and milk. So I asked Terri to stop giving them to mom as she was eating solid food well again at that time and no longer need the Ensure to get her calories.

It helped for a few weeks.... But then started again. I even went as far as change our milk product to coconut milk. Still didn't help.

Last week I was at my wits end and texted her PCP, who is a friend of mine that I use to work for. I think my text said, that if she could not help me with the vomiting... I was going to lose my mind. When mom has the fits of vomiting, she is good as long as you do not move her once her stomach has settled. So moving her from the couch to put her in bed, it starts all over again. It is only January and I've already missed a day of work, as Shawn and I had to sit up with her until like 2am the one day until the vomiting stopped. Not to mention that I had not a single towel or sheet left in the house that didn't now need to be washed.
She said to me that it was time to go see a GI Doctor. Luckily Shawnie has a very good friend that is a GI doctor. I called him Thursday of last week and he got mom into the office yesterday "Tuesday".

He feels that mom has a paralytic stomach. Meaning that mom's stomach is not chewing up the food and the food is not leaving her stomach. Once it gets to full the only way out is to vomit. He got to this conclusion by asking us what are we seeing in her vomit. I looked to Shawn to answer that question as I am such a sissy and can not even smell it much less look at it without vomiting myself. Doctor asked do you see food for breakfast? Shawn said we see food for dinner the night before!

He asked me if I would agree to a CT Scan just to be sure that there is not blockage or entanglement issue going on. As this is non-invasive test, I agreed. We are still waiting on a call to schedule the scan.

Last night I went out to by something to pulverize moms food before we feed it to her. That was the doctors recommendation to help with the vomiting. I bought to mac daddy Nurti-Bullet from Bed Bath and Beyond. Don't think that I thought it through though. It only has one speed and turns just about everything to mush. While mush might be ok; the noise is crazy. Shawn laughed when he read the box. 2.3 horsepower.... yup I think that will blend. So I am still on the hunt.

Today "Wednesday" we saw her Neurologist for the 6 month check up appt. The visit was mainly just a check in visit. She was surprised to see such a BIG change in mom from 6 months ago. I asked about taking mom off of the Exelon patch as we are way beyond it helping her with the prolonging of daily functions, like dressing herself- Bathing herself- or even feeding herself. She was not at all opposed or concerned to discontinue the medication. Not to mention that fact that the Patch alone was more than 4K a year.
I asked her Neurologist if she ever had a patient who's cognitive function increased when on antibiotics?  I said, I mean any antibiotic not use for a UTI.... She said no why.
Shawn and I both noticed that mom seems much more alert when on antibiotics - She feeds herself a few bites, she wants to walk around, she talks more etc. Her Dr. said that her ammonia levels might be off. That was her only though. She order blood work to have it checked.

Keeping you all updated to changes as promised!😉