Exactly How I Feel Most Days...

This song could not describe how I feel, only when I am breathing....




https://www.youtube.com/watch?v=v2F0h19plCQ


Drowning by Chris Young.



GUILT

Guilt is a powerful thing and I believe even more so when you are a people pleaser.  I'm struggling with a lot of guilt towards literally everything in my life right now.
Having moved daddy into our house with us has been a huge blessing and I am so grateful to take care of him.  He spent nearly 18 years taking care of me so the least I can do is take care of him now. 
However, doing this I am finding it very hard to balance marriage, daddy, work, house chores, friends, basically everything.
I feel guilty that I don't feel I am putting my husband first.  It's not that he has said anything to me, it's all me feeling this way.  He might be feeling neglected, but he has not verbalized it (yet). 
I feel guilty that I don't have my at least one day a week to go the cemetery to have my quiet time to think about my son.  Any day that I seem to have a few minutes that I could do that either the weather isn't cooperating or I feel guilty about leaving my desk at lunch.
I feel guilty that I'm not giving daddy enough of my time although it feels like that is all I do when I am with him.  I feel guilty dropping him off to another caregiver so I can go to the office.
I feel guilty that I may not be giving work 100% of what they need from me right now.
I do know that eventually we will find a good routine and a lot of this will iron itself out, but until then the heaviness of this guilt feels like more than I can bear at times. 
I've been made to feel guilty for working from home when someone thinks I should be in the office and then I feel guilty when I do go to the office, because not all mornings does daddy understand it isn't Saturday and I should be home.
I don't know how to balance all this yet.  I do know that it will come and I will figure it out, but I have to admit, my shoulders feel very heavy right now and when I feel I have let someone down or disappointed them just absolutely tears me up from the inside out.  I can't think, I can't eat, I can't sleep, I can't focus.  I feel paralyzed in my mind and in my heart when that happens.  Well, last night and today that is exactly how I feel and it takes a lot for me some days to pull myself out of that place. 
I will, but it takes a lot for it to happen....  Until a better day I suppose.

 

Red on the Head

Today would mark our little Jessica “aka” KiKi (honorably given to her by her baby sister Jorden) 32nd Birthday.  It is so hard to believe this baby has now been in heaven for 23years, one year longer than Chad lived on this earth.  It's crazy.
These two had a bond and connection like none other.  He couldn't wait until his birthday on May 25th each year, because from that day until today, October 19th they would be the same age.  He loved that.  The moment she had a birthday he would count down the days until they would be the same age again.  I'm pretty sure she got a big charge out of it each time she passed him up. 
They were so much fun and Chad used to tell all his friends when he was little that he already had a girlfriend and it was Jessica.  We loved it.
When she stayed at my house her bed was the bath tub full of quilts and blankets, because the two of them in the same room would mean, they nor I would ever have gotten any sleep.  For the record, she only turned the water on one time in her bath tub bed.  I guess one time was quite enough for that smart little girl.
In 1996 our precious girl was diagnosed with brain cancer that was unusual for children to get so there was no real case to know what treatment would work, if any.  For a very trying 5 weeks that baby went through surgery and chemo and so much treatments and medications, but sadly she lost that battle just before her birthday.  It was heartbreaking for everyone and none more than my sister.
Chad took this very hard as well, but he was blessed, because Jessica's little sister, only 4 at the time, stepped and almost like without thinking took over Jessica's role with Chad and they then became inseparable.
Since December 2010 I have no doubt that those two continue to have their age competition so today Jessie is celebrating big time and Chad is counting down the days until he catches up to her age again in May.
Boy how we all miss these two babies of ours, only when we are breathing.  Happy heavenly birthday my little Red on the Head.  Your Ammy loves you and misses you terribly.  Just enjoy your time with Chadman and I am certain the two of you greeted Granny, Nana, and your Uncle Eddie the moment they arrived along with all our loved ones we have lost since you two.

Easter morning

Ammy loving on her babies

You don't see this often (one of my favorites)

Jessie's birthday

Chad, Jorden, & Jessica

Besties

Jessica & Jorden (those curls)

BoBo reading them the horse book for probably the 100th time. "Love"

Who doesn't want to be cool and ride a motorcycle in the bath tub.  LOL

Jessie in her bed at Ammy's.

Helping Granny decorate her tree. She loved Christmas & even more when her grandbabies were there

Another Easter.  Beautiful!



Just one of those days...

I really dislike days like I'm having today.  I feel weepy and hurt for silly reasons on the hurt, but none the less, that's how it feels.
Have you ever had someone in your life that you try with all you have to make them happy and do the best for them for it to just turn around and they not receive it the way you intended?  If you haven't, I need your secret.  If you have, I would love any suggestions you may have to help me not take things to heart when that does occur.
I have a wonderful life and a very full life.  Some days the fullness is a bit overwhelming and today feels like that day.
I'm not wanting to complain or gripe, just sometimes I need to just get my thoughts out of my head and onto paper somehow.  Today seems to be one of those days.
I feel tired all the time, literally, all the time.  It's no one person's fault, actually I'm sure it's my fault.  I try to be everything to everyone all the time and there are days that I just fail at it all.  Today is that day.  Actually last night and into today was one of those days. 
I need to learn to find ways to decompress without impacting anyone around me and I haven't figured out that trick yet.
Chad is always on my mind and in my heart and some days I can bury those sad feelings better than other days and honestly now, there are more times than not that I feel guilty for still feeling sad.  I know there is no timeline to when or if grieving ever stops or lessens, but there are times that I am certain I put this on myself, but it feels like people are thinking, come on now, it's been almost 9 years, you should be better by now.  I don't know if I will ever be "better".  I do know I will never be the same person I was on December 1, 2010.  That I know for sure.
I believe this sadness adds to days like today as it is all encompassing at times and feels like a huge ball of yarn in my heart and I have a hard time expressing how that feels.  I'm not even sure how I can explain how I feel so it would be unfair for me to expect anyone else to feel or understand how I feel.  How could they unless they have lived it.

Neglected & Remembering

💓Dear Chad,


I am so sorry.  It's been nearly 3 weeks since I've gone to the cemetery for quiet time just with you and my thoughts.  I've been so preoccupied with BoBo and trying to keep up with work and house stuff that I just haven't had my normal weekly routine and today I felt tremendously guilty as though I have been neglecting you.  I would NEVER neglect you and just because I haven't been to the cemetery does not mean you haven't been on my mind 24/7 365!  That will never change. 


I also found myself feeling a bit jealous of my dear friend that lost her son, because she told me this week that they were working on a plan for her to no longer work and the only restriction her husband gave was she couldn't just sit at home everyday.  I long for the day I don't have to come into work and fake everything is fine when all I really want to do some days is crawl into a hole.


I would definitely not be alone or bored now with BoBo living with us.  He definitely keeps me busy, but I would really love not to have to fake how I feel around people in public and at work every single day.  I really hate it.


BoBo is settling in really well and has adjusted much better to living with us than I anticipated.  I knew it would be a challenge for all of us, but he has been a champ.  He has had just a couple of days where he was not so nice, but only one really bad day this past Monday.  He was very nasty to me and rude to Tebo, but we made it through the day all in one piece.  That's progress.  By the way, I was so flustered with him on me all day that I may or may not have had a little grease fire in the kitchen.  I got it put out before any damage was done, but it made me a nervous wreck.  BoBo was still just kind of on me and I just got a glass and poured myself some wine and sat down and watched Heartland with him so I could just chill instead of cry.  All was good once we ate dinner and got him into bed.  The next day things were much better.  I guess he just had a bad day and I know that is going to happen more often as things progress, but getting there will be a learn as I go type of thing.


Fortunately, or unfortunately, my sister has done a ton of research on this dreadful disease and is sharing all that with me as well as a cousin that is very well educated in this so with that kind of help to continue to educate myself will only help as things progress. 


I am blessed to have this chance to not only spend time caring for daddy, but to also give my sister some relief and freedom back so she can enjoy her children and husband again full time as well as give her flexibility to see our other sister fighting breast cancer right now.  That might not have been the case had he not made the move to our house. 


Daddy is such a loving fun man and when "Walter" doesn't show up it's a great time spent with him.  I will cherish this time always.


Today also marks the anniversary when our Jessica "Kiki" "Jesse Bo" went to heaven.  I have to believe she and Chadman are still catching him and Chad is still rubbing it in that they are the same age (well, until Oct. 19th) that is.  He loved from May to Oct. so they could be the same age.  It is so hard to comprehend that she has been in heaven for 23 years and Chadman has been there 9 years in December.  I know they are in a better place for them, but boy the hole they left down here will never be filled.  A mom's broken heart from losing a child cannot be explained or understood unless you have the horrible moment that you are in that position.  I pray no other parent has to out live their child. 



It's not him, it's the disease. It's not him, it's the disease

I tell myself this daily and will continue to have to remind myself that daddy's behavior and actions are not him, but the result of this horrible disease of Dementia and Alzheimer's.  I'm still very new at this full time, but certainly not new to this dreadful disease.  My mom passed away with it as well as my grandmother and now living day to day seeing daddy deteriorate right in front of my eyes can be a bit hard on the heart.
What's hard as well is not taking insults and nastiness personally.  That's easier said than done.  I continue to remind myself that it's not him, it's this disease. 
I'm actually fortunate enough to currently have a friend who was a home health physical therapist to watch him during the day.  I have avoided using the word "babysitter" from the start, but that is how he refers to her himself now and I guess parts of him little mind still comprehend things, but he loves going to spend the day with her.  Her name happens to be Dawn (which is also one of my sister's name) so that part is good so he can remember.  She came to visit one evening and she was wonderful with him and they hit it off right away.  We started the first week with him going Tuesday through Friday.  By Friday I could tell it felt like too much in a week so after talking to my boss we are going to attempt to just do Tuesday through Thursday and see how that goes.  However, that being said, I worked from home yesterday (Monday) after his doctor's appointment and it was less that a great day.  He was pretty snarky most of the day and even giving him his "sundowners" medication didn't ease up.  He stay pretty nasty with me most of the evening as well and was very rude at times to Tebo.  Again, I get it is the disease, but when you are looking your father in the face and he acts like someone completely different, that can be hard to take some times.
Again, we are still within the adjusting period for all 3 of us and while Tebo has probably done a much better job of adjusting than I have some days, he also hasn't been with him all day alone yet.  He has offered to take some vacation and give me a break so that may change sooner than later, but right now he has been a saving grace as well as my sweet friend, Dawn.
I do hate this disease more than most anything, but there is nothing to do except understand as much as you can about it and remember and remind yourself constantly that it isn't him/her, it is the disease.  I might as well have this taped on my forehead these days.
Patience will go a very long way and this may just be the Lord's way of teaching me to have more of them. 
We have, well, I definitely have, very long days.  I get up around 5:00 am to get completely ready for the day.  If I am working from home I do the same thing, but go directly into the office and start working until I hear him moving around in his bedroom.  Then I stop and get his coffee and breakfast ready and get all his meds pulled together.  We have breakfast together and I clean up and set him up with his favorite show, Heartland, and I get some work done.  I take breaks pretty often so he isn't sitting alone and watch his show with him.  I fix his lunch and we eat lunch together and then we walk around the block and I set him up with his show again and get some work done.  I continue to take breaks to sit with him or walk so he isn't alone until around 4:45 then I start dinner.  Days that he wants to I let him help me by chopping something or stirring something for me and I will fill the sink with hot soapy water and let him wash as we go.  If he isn't up to doing any of that he watches his show while I get dinner.  Once dinner is done we clean the kitchen and if the weather allows we will walk again and depending on the weather we will sit in the hot tub then we start his eye drops and medicine again and I help him to bed around 8:30-9:00 so we can start again the next morning.  If I have to be in the office the day starts the same, but after coffee I get his meds and drops and give him a snack and take him to Dawn's for the day.  We've leaned by laying clothes out the night before and getting his shower then helps us in the mornings.  Once I drop him off at Dawn's I go to the office and work through lunch and leave at 4:000 to pick him up and get home to either start dinner or get him ready for dinner out and we start our evening routine again.
We will get there and things have to get a bit smoother as we adjust and find what works.  I know it will be forever changing and there will be great days and there will be some not so great days.  I've been lucky so far to have more great days than not so great days and I have so grateful for that for as long as it continues.
Here are a few snapshots of him throughout his days since he moved in Labor Day weekend.  I just love this man.  I don't like the disease it makes him become at times, but I do love this man.  Honestly, to know him is to love him.  He is hard not to love and appreciate.

Napping very well

Getting his workout on

Showing out in his new golf pants

That combination though :)

Sporting all his TN gear

Working out and doing good

Putting flowers on his love's resting place (and adding water of course)

Missing his Chadman

Just arrived at the cemetery to pay our respects

Pool side, he was determined to tan those skinny bow-legged legs  Ha

Lifting his 8 lbs. weights

Napping again

Finally got a buckle for his holster (don't ask)