Sunday, June 21, 2015

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

Tuesday, March 3, 2015

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.

Tuesday, February 10, 2015

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.

Friday, January 30, 2015

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!

Wednesday, January 14, 2015

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!😉

Friday, January 9, 2015

New Year 2015

Many of our family and friends have asked me to beginning blogging again about mom's journey.

I've thought long and hard about the request and I think that it will be helpful for not only the friends and family, but also for me to put my thoughts to paper (or the internet :)

Mom moved back in with Shawn and I in February of 2014 after a one month stay at a live in facility.

The move to the live in facility was best for me at that time, but it was not what was best for mom. She declined rapidly while at the facility losing more than 20 lbs and losing every little bit of her personality that was left.
I tried everything to make the live in facility work, but when it became a matter of safety.... That is where I drew the line.

Mom was placed in the hospital on February 14 for a 4 day stay and never returned to the facility.
She came back to live with Shawn and I. Gary and I put our heads together as to what to do during the daytime as going back to the Daycare facility was not an option either.

I reached out to an AMAZING women by the name of Teri who mom had become very close with while in the Daycare program. I knew that Teri was not happy at her current place of employment, so I made her an offer. HAPPILY she accepted and has been caring for mom during the day ever since her 2 week notice was up.

She is AMAZING for not only mom, but for this entire family. We love her like she has always been a part of this crazy family..... Honestly... I would lose my SH%$ with out her.

She is the most reliable, sensitive, caring person I have ever met. Her patience with mom is like noting I've seen or able to do myself.

So let me bring you up to speed on where mom is within this horrible disease. She is no longer able to feed, bathe, or toilet herself. She requires help for all of these things. Her communication is at a minimum and most times the words are all garbled together. But.... Funny enough cuss words are still clear as day. Mom was a cusser while I was growing up... But now she is a sailor! We cant help but laugh sometimes. What can I say---I come by it honestly :)

We have to crush all of her medication before giving it to her and we have to mix it in with pudding. Getting her to take even the pudding use to be a challenge. I can remember a time when I literally had to plug her nose and cover her mouth so she could not breathe, to get her to open her mouth. I had to quickly shove the spoon full of pudding in while she was gasping for air... Horrible I know ... But you do what you have to do, sometimes. Now she has progressed so far that she takes it with no issues.

She needs supervision when getting up to walk around even the house. She is very unstable and has fallen a few times. Luckily all on carpet and not into anything. She gets up from the couch on her own and wanders around the house, but has never tried to go outside. Just as a precaution Shawn changed all of the exterior doors to require a key to get out. Multiple locks on the sliding glass doors.
She never gets out of bed. Once we put her in bed, I don't think that she realizes that she can get up, or maybe no longer has the strength to. We have to go and physically get her up in the mornings.

Teri talks her out for a walk just about daily even if it is only to check the mail. We use a wheelchair for her on some occasions when she gets too tired and is no longer able to walk.

Noises use to really bother her. When we would go out for dinner or anywhere when someone dropped something or banged plates or glass together she would freak out and yell... Not anymore. We are able to take her to dinner or out and about with us most always.

Mom experiences vomiting a lot for no known reason. She has had scans done in the past but nothing additional was found. We are going to see a GI provider this coming week. This is one of the more difficult things to deal with. No warning, all over the place, and for hours.
Shawn and I keep her sleeping propped up to prevent her from aspirating if she gets sick during the night.

Mom walks with her head down and seldom lifts her head to make eye contact with you.  Her neck muscles are so tight. Her left arm is also minimally used as she had a mini stroke and that is the lasting effect. She holds it very close to her body at all times.

She still bits her nails, but only on her right had :) At times the noise aggravates me so much that I have to put a sock over her hand to prevent her from chewing them.

Lots of people always said to me that things happen for a reason. Living through this journey with mom, I am now a true believer. I can not even begin to wrap my head around the though of dad still caring for mom during these late stages. I always laugh at the thought of me caring for mom with a child.... I guess now I know the reason I was not able to get pregnant when we tried.

I am blessed each and every day to walk through this journey with mom and help care for her. I'm not going to lie... It is trying at times and sometimes need a break .. But all and all.. I am grateful.

She would have done this for me... Hell she did, through my whole childhood.

I love this new woman Georgiana has become. I refer to her as Georgiana, because that is the only name she responds to. She does not respond to mom at all. In her mind she is no longer a mom. She is Georgiana. It was weird in the beginning, but now it is just natural. Gary still has a hard time with it and calls her mom at most times. But she is not responsive.

As I said in the beginning. I will do my best to update weekly or at least when something new occurs.