Such loving care

This is Emmet, one of Frankie’s caregivers. He is truly one of the angels that give Frank the love and patience needed to get through some of the trying days! Of course, there are many angels that work there and care for Frankie, but Emmet has a special way with him. I suppose being a guy and all, Frankie probably responds a little differently with him! Who knows, cuz he adores his lady caregivers. Although, I find that he can be a bit more cantankerous with the women at times. My own personal take on that is he still has buried in him that make chauvinism that no woman is going to tell him what to do ๐Ÿ˜‚

Danny and I took him to lunch Wednesday and we had a nice time, but we both see how much the rigidity of the Parkinson’s has taken over. When we were leaving, Frankie has a grip on both my hands and would not let go!! I had to have Danny pry off his fingers to get my hands out๐Ÿ˜œ. However, I’m laughing because Frankie is simply looking at us like “what the hell are you doing!!” It’s always an adventure with him โค๏ธ

On Saturday, I went to have lunch with him and he totally would not give me any sort of recognition or smile. So it goes with good days and bad days. They really aren’t bad days, just days when he is deeper inside himself. The nurse practitioner said that he is continuing to lose weight and they will monitor it a little closer. What that actually means, I’m not sure, other than it could be getting closer to the point of possibly getting hospice involved, but we’re not there yet. The disease is simply amping up a bit. Those proteins at some point will keep the brain from any type of communication with the rest of the body, slowly stopping their functions ๐Ÿ˜”

Last night, he was having no part of sitting on the toilet!! He pulled his pants down and walked out of the bathroom (only a few steps)! Needless to say, he went down on his knees and tumbled over. Fortunately on the carpet and not the tile floor. He bruised his knee, but broke nothing. Today, he is fine! Walked to breakfast with no problems, other than it being a slow shuffle ๐Ÿ˜œ. So goes it in the day and life of the Frankmeister!!!

I bid you all a wonderful Sunday and a great week ahead โค๏ธ

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Status quo

here is Frankie after a full lunch! We walk around the facility for half an hour, then head back to his room. We hug and sway to the imaginary music for a little while and then he’s ready to lay down! Usually within five minutes he is sound asleep. There are times he is reaching for things as he sleeps so he must do a lot of dreaming, especially in his rem time.

As you have noticed, I haven’t been writing much about my visits. It isn’t because I’m not there, I struggle with finding the words that describe a typical day with him, since they don’t vary much. Other than him smiling some days, and him just staring at me the whole time, nothing much has changed. It’s probably because I see him often enough to go with the flow and only see the gradual decline. For those that see him once a month or longer in between visits, have noticed a big difference in him.

Danny and I took him to lunch Wednesday and he had not seen Frankie since early June, as he and Rosemary were on vacation. He came to the realization that even he would now have a difficult time taking him to lunch all be. You really do need two people to manage him. His rigidity has become ever so difficult. He holds his hands in tight fists and if he is holding your hand, they are vice grips!! He has a hard d time understanding what we mean when trying to get him to lift his leg into the car, he fights whatever we are trying to do. But thank God, Danny is so patient with him and works with him, then actually lifts his butt over to the center of the car seat. Frankie grasps the seat belt like a life line and won’t let go!! We pry his fingers off, so I can buckle it, then he grabs it again once it is fastened!! We have to physically swing his legs over in order to get him to step down out of the car. He sometimes moans as if it hurts him, but then he does it and we cheer for him and he smiles ๐Ÿ˜Š

It really is cute the way he plays with things at the table! There are times when he goes to reach for something as if he knows he’s not supposed to, but has that toddler look on his face like “no one will catch me!!!” When I take it away, he looks at me like “why!!?” I distract him with something else and all is good!! He does love his French toast and fruit! And he loves sitting across from Danny and smiles at him a lot! It’s a struggle taking him out, but so worth watching him enjoy those moments. Some of his caregivers have told me that he is having a few more cantankerous days as time goes on. This is to be expected.

I thought it would get easier as time goes by accepting this path we have been led down, but there are those days I long for our old times of laughing and sharing our time together. Honestly, I am not feeling sorry for myself because everyone has hurdles and crosses to bear in their lifetime, I just miss the life we shared before this disease became a part of our lives! I am thankful that Frankie doesn’t really know what his life is like now, because I know he would not want to live like this. I find myself asking God daily to trust in his wisdom that it is all part of the plan. And He always gives his signs that He is there helping us walk this path. No matter how hard things may seem, I am blessed to be the one that gets the opportunity to be at Frankie’s side helping him navigate this journey.

Thank you all for walking along side of me! Love โค๏ธโค๏ธโค๏ธโค๏ธ

Road Trip

It was a beautiful, warm day and Frankie was all set to go on a small road trip with his friends!

the lovely lady with him is Lakeisha, one of his fabulous caregivers โค๏ธ. Not really sure where they go! I’m pretty sure they just drive around for a little excursion and get them outside!

He was in a very smiley mood yesterday, which made it that much easier to get him to go along. He has been having a few more cranky days of late and gives the ladies a hard time when he doesn’t want to do something! However, when I was leading him out of the dining room, he was resisting some, so as I was facing him, holding his hands, I raised his clenched fists up and asked him if he wanted to touch the girls!! I pressed his knuckles against my boobs and he got all wide eyed and giggly! It was really cute the way he then just kept following my lead wherever I went!๐Ÿ˜‚. He’s such a guy๐Ÿ˜œ, still in there!

Fortunately, he has been on a pretty even keel when I am with him. He doesn’t always recognize me but starts smiling after a little while of me doting on him!! So whether it is recognition or just that he likes the one on one attention I give him, not sure! But I’ll take it whatever it is๐Ÿ˜Š

He is still able to drink by himself, but I am noticing that he tends to choke ever so slightly more often. Either with his food or when he drinks, he is taking a breath instead of swallowing, causing him to start coughing. It is difficult trying to explain to someone like Frankie how to relax and just breathe slowly. He squeezes his eyes closed and just coughs! It seems to work for him, he knows something isn’t right but has no clue what is happening!

That’s about all for now, hope everyone has a great dayโค๏ธ

Dancing to the beat

There was a terrific five piece band at the facility yesterday and Frankie got his groove on!! He moved his feet and hips ever so slowly but felt the rhythm just the same!

after all these years, he was finally following my lead๐Ÿ˜‚๐Ÿ˜‚ he really enjoyed himself, the smile never left his face๐Ÿ˜Š

That was after he had eaten his entire lunch, with my help of course! So it was a great day for him! We walked back to his room and on the way, he saw Niesha, one of his caregivers, and he said “come here you!” And gave her a great big hug!! It was sooo cute!

I was a little concerned about how he would be yesterday, because his cousins, Celia, Butchie and Charlie went to see him Sunday and they told me he was very withdrawn and had no recognition of them whatsoever โ˜น๏ธ. I explained that unfortunately, that is how it works! A good day, a bad day and so on. It was a little unsettling to them to see him that way.

On a side note, I have to share with you all a funny conversation I had yesterday with the grandkids. Their nanny sitter was with them yesterday and when I got to the house, I asked Brennan what they did! He responded that they went to get air! I said what? He said we went to get air! I asked if they went for a walk and he said no. I asked if they went for a ride to get air and he said yes! I asked Hannah what they did and she said the same thing, they went to get air! So I asked if Kayvin needed air in her car tires!!?! She looks at me quizzically and says , no Grandma, we went to get air!! I asked “what does that mean?!” She says, it’s a trampoline place “Get Air”!! OMG, think I’m a little out of touch!๐Ÿ˜œ

So there you have it, they couldn’t understand that I didn’t know what they were talking about ๐Ÿ˜‚. More lessons learned, never too old to learn new things!!!

It is an absolutely gorgeous day today, so I hope all of you have a fabulous dayโค๏ธ

Giganti Golf Outing 2018

it’s hard to believe that another year has slipped by and the Phi Delta Theta brothers put on once again, a phenomenal golf outing! PJ Nitray and Rick Kappel, along with the help of other terrific Phi’s did a great job. They had brothers from Texas, Colorado, Florida, Tennessee, North Carolina and Ohio (I probably missed some states, sorry guys) come to share a day with each other and to see Frankie โค๏ธ. Fortunately, the weather cooperated and only spit a few sprinkles and was a tad chilly, but all in all, it was a great day!!

The picture is of Frankie, Bob Maurer and Bill Protz, aka the Stumpy trio!! They always called each other that at BG and have ever since! Have to love tradition ๐Ÿ˜‚. I can’t begin to tell how loving everyone was to Frankie. I believe as we all get older, we truly value the friendships that we have formed over the years. Even the brothers that were at BG after Frank was there, came to share in the day. After dinner, there was a beautiful moment of silence and quiet prayer for all the brothers that had passed on to the Grand Chapter ๐Ÿ™โค๏ธ. It was really touching.

They made my eyes water again when They serenaded me with the Phi Delta Theta sweetheart song. They sprung a leak again when they gave Frankie a standing ovation for everything he did in the past to keep the fraternity brothers in touch with each other ๐Ÿ˜Š. They even presented me with a Phi sweetheart visor that has Frankie’s bond number on it! So very thoughtful of them. Even though I was not a part of his college days, I have come to know and love so many of his fraternity brothers as they have welcomed me with open arms.

Amazingly, Frankie did so well when I brought him to the dinner. He spent most of the time smiling and giggling and saying “oh nooooo!” It was precious seeing his reaction in his eyes and his smile when he saw some of the brothers! We are truly blessed to have so many wonderful people as friends โค๏ธ

Thank you all for following our journey ๐Ÿ˜˜

A little helping hand

When I arrived to have lunch with Frankie, I saw a lot of the residents making their way to the dining room. I looked down the hall and there he was, pushing one of the guys in his wheelchair โค๏ธ. It was so cute seeing him do this. When he got closer to the dining room, one of the caregivers told Frankie they would take over now! But he wouldn’t let go!! We had to pry his strong little hands away. I then took his hand and he held on for dear life! I think besides helping, he liked having the chair to hold on to as he walked. Although, the caregivers say he walks around the facility just fine by himself, be it very slowly, but does just fine.

I find it somewhat amazing that ever since the hospital stay, and getting him off the insulin, he has really been a happy little guy๐Ÿ˜Š. Maybe I am coddling him a bit, but I find that I still need to feed him. Once in awhile, he will stab something with his fork, but then still plays with the food ๐Ÿ˜œ

Today, Danny and I took him to lunch and he was in a great mood. I had told the staff about how Frankie says I can’t appreciate Italian cooking because “I’m just a white woman!!” They laughed and laughed, so they asked him today if I was just a white woman? And he smiled and said “yes!!” He is still in there somewhere!!

It is truly one gorgeous day hereโ˜€๏ธ๐Ÿ‘๐Ÿป

I wish everyone a great Memorial Day weekend ๐Ÿ‡บ๐Ÿ‡ธ

Taking a walk outside

It was such a beautiful day, after lunch we took a walk around the courtyard. It appears Frankie inherited a new shirt from another resident ๐Ÿ˜Š. He didn’t want to go inside! So we walked ever so slowly around and around. He is starting to keep his hands more clenched than before and his gait has become so short and slow. Trying to unclench his hands is like trying to loosen a vice grip with the lock on๐Ÿ˜. He was in a pretty decent mood, although I couldn’t get him to smile at me until I blew on his neck! He flinched, then started giggling ๐Ÿ˜‚. So I found a way to distract his deep blank stare! I also am noticing more jerky movements out of nowhere. He was drinking his water and suddenly a jerk happened and he spilled the water! Not a lot, but enough. He gets agitated when that happens, so I blew on his neck and he smiled ๐Ÿ˜Š.

Danny took him to lunch on Thursday and he said he ate well but is getting so slow in his walking. Sweet Emily had him in her office for awhile and he just loves being there with her.

The peace of mind that I have knowing he is so well taken care is priceless. Once again, I have to give thanks to God for steering us to this place. We had to experience the first place to truly appreciate the people now caring for him.

I went to a book signing this week for my friend, Kate Harvie. She is such an inspiration. Check out her book: Believe It, Behave It. She experienced and recovered from a traumatic brain injury and wrote about it to help others (no matter what their struggles) rebuild their lives. So proud of her courage โค๏ธ

I am sitting outside enjoying my coffee and it wasn’t supposed to rain until noon, but the skies are dropping water as I write this. Not complaining, because I love being outside no matter what the weather in the spring (which took it’s good old time to get here!)

My iris plants are blooming and the bluebells are are all out. There was only one tulip this year, as the chipmunks have devoured all the other bulbs!!

Going to a friends house later to do a Reiki share with her. We both need that beautiful healing energy. Have a great weekend everyoneโค๏ธ

A visit to the hospital

So I received a call in the wee hours of Sunday morning informing me that Frankie’s sugar was very low and that they called an ambulance to take him to a local hospital. When I called said hospital, they told me that they were transferring him to Akron General since they didn’t have any beds ! He was due to arrive there around 8:30am. Got myself together and did the routine: sh*t, shower and shave! Oh that’s right, I don’t have to shave!๐Ÿ˜‚. And off I went to meet him at the hospital. Of course you hurry up and wait, they didn’t arrive until 9:30! When the transport got there, he was in pretty good spirits, had no clue what was happening. The nurse in charge was grateful I was there early so we could get all the necessary questions answered. His glucose number was slowly rising with the sugar water i.v., but was still too low, at the critical stage. High glucose will cause damage to parts of the body but low glucose can kill you!

I give all nurses great credit and the aides as well because it is not an easy job. They would ask Frankie questions and he would just stare at them! I asked them if they were aware that he has dementia and was basically nonverbal!? They said yes and then would ask me the questions ๐Ÿ™„. I will say that they were all grateful I was there, as I helped with the tasks that needed to be done! I think every hospital is grossly understaffed โ˜น๏ธ to which they all agreed! I knew at that point, I would be spending the night there in one of those god forsaken recliners next to his bed. We were in a shared room that truly was only big enough for one bed, let alone two!! His roommate was a nice man, but very loud and was always talking to himself. Not sure if he was dreaming or just carrying on a conversation with someone he thought was there, but it was a very long night!!! Thankfully, it didn’t seem to bother Frankie, only me! I knew the poor guy couldn’t help it, so I just prayed that he would sleep quietly for a couple hours๐Ÿ˜œ

The doctor that attended to Frankie was very good and open about what was happening. Since August of last year, he has lost fifty pounds and with his inability to eat by himself, his consumption of food has dwindled. That along with the fact that he no longer nibbles on his favorite sweets, the doctor felt that insulin injections were no longer needed. It was causing too many lows for him. His sons and I agreed to that concept. We also made sure that we had the right directives in place to prevent another trip to the hospital. Time to just let nature take its course.

He agreed to get him discharged as his numbers were pretty much back to normal and the transportation was coming at 5:30pm Monday. I called ahead to Maplewood to make sure they had a dinner waiting for him when we got there. It was a tense last hour at the hospital as Frankie took a drastic change in attitude. He was angry, combative and verbally ugly. It came out of nowhere!! I finally asked the two aides to leave him alone and I was able to get him calmed down enough. I was thinking to myself, oh no, are the really ugly parts of Lewy Body starting to surface!!? I sure hope not, but one never knows! I forewarned the staff at Maplewood what took place. Once he was back there last night, his whole demeanor changed. He was happy ๐Ÿ‘๐Ÿป๐Ÿ™๐Ÿ˜€

When I talked to the nurse this morning to check on him, she said he wouldn’t let them shave him, that he was combative, so we may see a beard grow on that cute Sicilian face of his!๐Ÿ˜‚.

Needless to say, I slept like a rock last night and feel much better today. It was just another chapter in our journey together!

It is so beautiful outside today and the birds are yakking up a storm! Love the springtime, now that it finally showed its face here! Hope everyone has a great dayโค๏ธ

Going away part

What a cute face he has on, as he holds hands with Lynette โค๏ธ. It was her going away party and she absolutely wanted Frankie to share in the festivities! She is going to the home office in Connecticut and she has been one of his favorites! If only he could remember, I know he would miss her. Emily has texted me this week saying how smiley and happy he has been! Which is a fabulous thing, since he seems to be cranky pants with me๐Ÿ™„. That’s ok, but it’s a little hard on my own ego๐Ÿ˜‚. Maybe I should take pride in the fact that when I’m not there, he’s a good boy๐Ÿ˜œ. Sort of like we all hope our kids are when they are away from us!! Gotta love it when Frankie is still the life of the party, just like he used to be back in the day. It’s also fun to see some of the clothes he has inherited, knowing I didn’t supply them ๐Ÿ˜† Whatever works!! And whatever fits, it’s all good!

It’s a great day when he can hold hands with two of his favorite ladiesโค๏ธ

Twinkling Eyes Return

It only took a visit from dear friends Ron and Donna to bring back that adorable twinkle in Frankie’s eyes. They, along with Danny and myself, took Frankie to lunch and he was so excited to see them. I’m never quite sure if the recognition will surface when friends and family visit, so when it does, his eyes speak volumes!! He may mumble something that none of us understand, but the smiles say it all.

His rigidity is becoming so difficult, it truly takes two people to help get him in a car to go somewhere. Because he doesn’t really comprehend what we say at times, he will tense up and resist. It can even be comical when you are trying to lift his legs and swing him over onto the seat. And yet, there are times when he actually tries to step into the car!! Never quite know what he understands and what he doesn’t! But we make the best of it and tell him how good he is doing even if it is a major struggle!

Eating is taking longer and longer as he just can’t grasp the whole feeding yourself concept any longer. It is a good thing that he chews his food so thoroughly, but I’m wondering if at times he forgets that he is supposed to swallow his food. But hey, at least he eventually does and even those times when I say “open wide” and he makes the gesture of taking a sip of water, by the third or fourth time, he will open wide! I think it just takes that much longer for even the simplest request to find its way around his brain to register. Patience is truly needed and thank God, He gives it to me โค๏ธ

This excursion took place early last week, and when I went back later in the week to help him with lunch, he was cranky pants again!! The blank stares and aggravation was the norm! Every day is a guessing game with him. And yet, Emily texted me yesterday telling me his was all smiles and that she already got five kisses from him ๐Ÿ˜˜

Makes life interesting for sure, but I so love that he is so genuinely cared for there.

Some extra prayers this week, as my classmate, Scott, had to say farewell to his Mom and a truck driver I used to work with with was killed in a terrible accident. Remember to cherish every single day, we never know what plan God has for us and when it is time to go. Live life, laugh in life and love life โค๏ธ. And learn to forgive yourself and others!