Posts Tagged father

A sad anniversary – Part 2

A lot of what you see now about Hurricane Katrina is a lot of before and after images.  While some of them are quite sad – as in areas where homes and lives where swept away and not rebuilt – there are many that show how live and areas were rebuilt and are on the mend if not thriving.  When I think back to that time with my father I think about how terrified I was that he probably wasn’t going to recover and that the only surviving parent I had who still knew who I was and could talk to me was going to die.  You see, mom, who wouldn’t pass for another five years, had Alzheimer’s but had long ago forgotten who I was as well as lost her ability to speak coherently.  For whatever reason, it was important to me and in some ways gave me the strength to carry on being a caregiver to have at least one of them who I could still talk to and relate to as a parent more than as someone I took care of.

I had the option of removing him from life support within a couple of days but I wasn’t ready to do that.  That has got to be one of the hardest decisions in the world for anyone to have to make and as I was neither willing nor ready to make it, I asked them what my options were.  I was told he could remain on the ventilator for up to 7 days and then he’d have to come off it or they would have to insert it via an incision in his neck.  Just make my damn day happy with options why don’t you!!!  So I opted to keep him on the ventilator for as long as they’d let me and then I’d decide one way or the other.

Every day I would get up, eat a little bit of something and then head off to the hospital to be with my father in the ICU.  After a while I basically tuned out the news of the hurricane and turned it to where it needed to be – with my dad.  I spoke to him, I brushed his hair, I prayed, I took notice of all of the machines around him and learned what they were, what they did, and what the various numbers meant.  I also had to get in the faces of a couple of staff doctors who, in my opinion, felt that as he was a dying man (me screaming you don’t know that for sure inside) they didn’t need to spend time monitoring him or speaking with me.  I still get a satisfying smirk on my face when I think about that one doctor who basically came in the room, barely said hello, read some numbers and then went to another computer to log in some things.  I walked right up behind him and stood there until he explained what was going on.  I was not going to budge until I got my questions answered.

Sometimes other family members would stop by but they never stayed as long as I did.  A friend from church came one time and prayed with me over dad and then asked if I wanted anything from the cafeteria.  She brought me back just what I wanted – the red jello with a ton of whipped cream on the top.  That was some good jello and I needed it.  Eventually they asked if I wanted to see anyone from the hospital’s social service department and I said yes.  It was a good thing I did too because that wonderfully kind woman helped steer me out of the fog I was in and helped me to focus on what I needed to do.  You see, when you become a caregiver eventually you will have to do the “heavy” legal stuff of power of attorney, health care directives and things like that.  They can be depressing to think about and a chore to get depending on if you have ready access to those who can help you create the documents but they are very very important.

But they also have certain limitations and I learned that from the social worker.  As caregiver to mom and dad I had duplicate legal papers for both of them with me being the primary responsible party and my sister being secondary if I were unavailable or unable.  The power of attorney papers made it where I could sign everything necessary for their care as well as handle their finances.  As dad was in a vets home and mom in a nursing home on state assistance I had yearly paper work to fill out for both state and federal assistance;  it was a lot of responsibility.  I assumed that there wouldn’t be a problem handling things with dad for mom (as in the life insurance policy he held for her and his sparse saving account) once he passed but was I ever wrong!  That POA (power of attorney) is only good as long as the person it is for is alive.  I was told that whatever I needed to do to make sure mom would still be cared for that was in any way linked to dad, I’d better get it taken care of while he was still alive and quickly!

So for a few days I would come visit my father, tell him don’t go anywhere yet, and then I’d run off to consult with my lawyer about how to handle things.  It took me a few days but I got it all done before I had to make the decision of what to do about the ventilator.  I didn’t want them cutting him anywhere so I gave in after what felt like being shoved into a corner and let them remove the ventilator.  They told me he would probably last around 48 hours tops but they were wrong!  He was transferred to a private room where he received only palliative care.  The nursing staff on that floor were so kind to me.  I was shown where the fridge with the snacks were and where the coffee machine was.  I was given a card with the chaplains number on it to call anytime I needed it; for anytime I wasn’t in the chapel itself.

There were no visiting hours set for me; I could come and go as I saw fit.  I didn’t turn the television on much in that room and when I did it was to something completely mindless like cartoons or game shows, no more news for me, I had had enough.  I would pull a chair up and sit next to his bed and occasionally I would talk to him but by this time it was just sitting there with him to keep him “company”.  I still recall how one time I fell asleep with my head resting on his bed next to his hand and I had a dream where he patted me on the head lovingly.  I awoke with a start wondering if it had been real or not.  I think in a way it was real.

I had stopped whispering in his ear to stay put until I came back and one day I whispered “I’ve gotten everything taken care of.  Mom will be alright.  You can go whenever you’re ready.”  It took a lot to finally say that but it needed to be said.  I know he heard me.  In my heart I felt that hearing beeps of machines and whatever was on the television was just not a great last sounds to hear so I, or was it my nephew, made a CD of his favorite jazz music.  That disc (which is lovingly put away) was loaded with Miles Davis, Coltrane, Dave Brubeck, and more.  I had to dig through my memory of what he and mom used to play at home as well as through his LP collection which I now had.  A wonderful thing happened which confirmed what I felt about what he could “hear”.  His breathing by this time had become a bit labored and raspy the day I slipped the earphones over his ears. When I turned on the music his breathing calmed down and was far less raspy; his whole body seemed to relax.  I was so happy that I was able to do something for him again instead of watching him leave.

One day they told me that his death was imminent due to whatever their reading and tests were showing them.  I said I was going to stay there until he passed where upon they offered to bring in a bed for me.  I had been resting in the hospital equivalent of a recliner chair up until that time and told them I’d let them know if I wanted the bed.  I never needed it because that day as I was standing there talking to one of the chaplains as a nurse checked something on him he drew his last breath right before our eyes.  It’s hard watching someone die in front of you and even harder when it’s someone you love.  It wasn’t scary at all; it was surreal.  I didn’t want to leave him.  I wanted to stay until the funeral home people came for his body but they gently, but firmly, told me that it would be better if I went home  to prepare.

I really really didn’t want to go because I knew the next time I saw him would be at his funeral and that was something I wasn’t looking forward to.  It took a team of people that included my son, his father and my nephew to get me, my car, and their cars home.  They didn’t want me driving for some reason (sarcasm inserted here).  There were no more tears for me until the day of his funeral and not until they played taps…I lost it then!  Afterwards when I would go to Jefferson Barracks National Cemetery to visit him, his father and then a year later a nephew, I would bring a pillow and sit on his grave facing the headstone and tell him all about my day, life in general, and of course about mom.  I used to be terrified of cemeteries but there it is so peaceful and beautiful.

You are loved and missed, Daddy, but you and mom are together in a much better place and that’s good.

 

(If you are a caregiver you need to advocate for your loved one and don’t let anyone, no matter what their title may be (doctor, nurse, administrator, etc.), try to make you feel that you don’t know what’s going on or try to pressure you into a procedure or decision that you are not comfortable with.  Learn everything you can about your loved ones condition, medications, test results, etc. An educated caregiver is a powerful caregiver.  You will need a good legal representative to help you with the paperwork you will need – or at the least explain to you what you will need and how it works.  You don’t want to be caught without the necessary tools for helping you take care of your loved ones needs.)

 

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Something scary has happened again…

My original intent of this blog was to follow the timeline of my life as a caregiver but we know that plan went to hell in a hand basket.  But isn’t that just like dementia and Alzheimer’s?  You never know what is going to happen from day to day and you just have to deal with it as it comes at you; plans will get screwed up!  Today I am dreading next week not because of something that is actually coming up but more so because of an anniversary that is coming that always brings tears to my eyes.  It’s been 10 years now but it still gives me a kick in the gut each year.  Will share with you next week about this…

But what happened today was that as I was working away at my desk I paused to let my poor tired eyes rest and I turned to look at the cork board I have on the wall next to me which is filled with a potpourri of items – notes, greeting cards, old work ID badges, a movie ticket stub (why is that one there by the way???), a ten dollar bill I found once in a mud puddle and photos.  There are photos of the kids, the grandchild, me and the spouse, me and my father and one of mom walking down the hallway with a smile on her face in the locked Alzheimer’s unit of her first nursing home.

I came to really hate that place but that’s another story for another day.  What scared me was that with all of those photos up there the ones of mom and dad had the opposite effect on me.  I look at the one of me and dad in his wheelchair and I get misty eyed and miss him but the one of mom?  I find myself staring at the photo and trying to connect some how and all I feel is this lost and disconnected feeling; almost as if she is a stranger or at best a distant relative.  And that is scary!  Dad passed away 10 years ago but mom passed 5 years ago.  So why do I feel more connected to him than her?  That robbing bastard Alzheimer’s!

Up until he took a turn for the worse, I could still talk to my father even if it was in short sentences and he still knew who I was.  But I dropped off mom’s radar some 14+ years ago.  She was always mom – nothing could ever change that – but the reality was that she was just this little old lady with Alzheimer’s that I was taking care of and took care of for many many years.  Somewhere in there that mother daughter relationship took a up in the nosebleed section back seat to the caregiver/dementia patient relationship; that is if you could even call it a relationship because there was no give and take, there were no conversations (she went into word salad mode very early in the disease), and there was no recognition from her side of the fence of anything other than basic feelings and emotions.  She smiled at things we couldn’t figure out what the hell she was smiling about.  She smiled when you gave her chocolate to eat and she would yell and once in a while curse if you touched or grabbed her the wrong way and let’s not talk about the commotion when it was time to do any lab work.  If you didn’t watch out she could punch you pretty good.

But even with all of these memories I still look at her picture or think about her sometimes and feel this lost emptiness, a failure to “feel” her.  My mother left me a long time ago and I don’t seem to be able to find her…and that’s scary.

 

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Father’s Day and Caregiving

My daddy (yes! I will forever call him daddy) passed away in 2005 from renal failure brought on by diabetes.  For five or so years before that I was the primary caregiver to him and mom at the same time.  For awhile there I tried to manage taking care of them in their home but when that blew up they had to be sent to two different nursing homes because they had different health concerns.  Mom had Alzheimer’s and Dad was a diabetic.

The parental holidays of Mother’s and Father’s day were always bittersweet for me because they were both sick, in care facilities and apart from each other.  My only solace was that at least mom enjoyed her chocolate I always brought her for her day – even if she hadn’t a clue as to who was feeding it to her – and Dad, while getting progressively sicker, knew who we all were and could enjoy time with us in almost the same ways as before he became ill.  He could read the goofy cards we got him (we were never a family of mushy cards; it had to be fun and silly or it just wasn’t us!) and we would tie a balloon to his wheelchair for awhile until his grumbling made us take it off.  But he would always proudly wear the wonderfully outrageous tee shirts I would get him as a present.  It got to a point that the staff would come by to see what I brought him this time.  Whenever he would wear one of those shirts the staff would smile and say to him “I see your daughter got you another shirt, Thomas.”  That would make him smile; anytime something made him smile that would make me happy.

But no matter how the day would go there was still this bit of sadness because we had to drive a long way to get to his Veteran’s home and I would ultimately have to slip away from the burger bonanza (we knew we were doing wrong by his health but we always brought him burgers, fries and a malt on special days) to go talk to the nursing staff to handle business or to check on his kidney function levels.  Nothing like going over the numbers on a chart that are telling me that my father’s kidneys are failing and only dialysis would help him.  See, the problem with that was at the VA home they could not do dialysis and he would have to be taken so many days a week to a hospital that was an hour away for the treatment and the cost of going back and forth was sizable and not covered by insurance.  Daddy put the brakes on that option by saying – and I quote – “Hell no! I am not going to go through that!”

Stubborn hard headed man but it was his choice and other than going through legal hoops I could do nothing but respect his wishes.  We got into a few arguments about his treatment plans but in the end it was his body his choice and his mind was still pretty sharp so I had to let him chose to live and end his life they way he wanted to.  Lord! That man was stubborn and to this day I feel that if he hadn’t been so he might have been spared some of the harshness and collateral damage (leg amputations) of the disease.  Again, his choice.  That is something that all of us as caregivers have to go through; doing this dance of what we think is best for the ones we are caring for vs what they want.  I wish you the best if you are in the midst of this tango and really hope you never have to go through the process of legal guardianship for your loved one in order to take care of them – that can get ugly all around.

The first holidays after a death are always the hardest and to be honest they never get really easy – just not as painful.  For Father’s Day I now send a wreath to his grave site and when I could I would go visit and sit on his grave and tell him all about how stupid his grandchildren were 🙂  Yes, I would sit on his grave facing his headstone and have wonderful conversations with him.  We all do what works for us.  When he was alive I envied others who had father’s that they would go visit at their own homes or they would post pictures on social media of the family all surrounding dear old Dad at a family gathering or restaurant.  Eventually I came to terms with those things and I stopped caring about what others could do or did and was just thankful that no matter his condition I could still touch his hand, stroke his beautiful curly hair, and offer him a beer even when it became difficult for him to drink one.

Now I just feel a bit sad, shed a few tears, and miss my daddy terribly but I am happy he is with mom and is whole again.  For those of you who still have your father with you I hope you have a wonderful Father’s Day with him.  If you are his caregiver I hope the day is extra specially good because the rest of the days are probably rough.

Happy Father’s Day Daddy.  Love and miss you.

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Shame and Embarrassment

About not having done a post in entirely too long (I am sorry about that) and remembering a time when I was so embarrassed about my mother and her Alzheimer’s.  I think to some extent we all have moments of being embarrassed by/about our parents – especially during the teen years – but when they become ill that takes on a new form.  Why was I embarassed? My mother was sick, she had a disease that there still is no cure for, it wasn’t her fault, she wasn’t the only one with Alzheimer’s in the world, she was old…and there were too many times I was ashamed (yes I said it) and embarassed to be seen in public with her.

Well, for one, when out in public with her I was always freaking out that she might wander off but more so I was ashamed of how she looked and acted and by the stares from others.  If I could reach back in time and smack some sense into myself I would.  Mom went from being a woman who had a regular you could set your watch to it appointment at the hair salon to looking as if she didn’t know what a brush was.  She went from keeping herself and the house clean to both being a total mess.  And of course she went from knowing how to have a conversation with people to heaven only knows what would come out of her mouth!

And I was ashamed to be seen with her.  I was embarrassed that she was sick with a disease that at the time I had no idea what the hell was going on and like too many ill informed people considered it a mental illness of the type where “we don’t talk about that family member” type.  When I did go out with my parents (by this time mom and dad were pretty much glued at the hip) I would walk some steps behind or in front of them because I didn’t want to be associated with this old sick couple.  I didn’t mind if people thought I was with dad – he still had both legs and the diabetes hadn’t taken over yet – he looked and acted “normal” but mom? Ugh!

Her hair was often not brushed, she wore clothing that was too big for her sometimes and often you could read their breakfast menu by the stains on her shirt which often was on it’s 3rd day of wearing.  I was ashamed, embarrassed and hurt.  I know about the hurt now because, well, you know how hindsight is.  I was hurting because my mother was sick, I didn’t know what was going on, I felt powerless and I needed to have my mom be my mom!  I wanted to have a mom like everyone else I knew – not sick.  As the dementia progressed and she began to become violent sometimes when we would try to go out with her or have people come in to help, I gave up trying to go out with them unless I really had to.  It was just as well because it was shortly after that that they both became too ill and had to go into homes.

If you are a caregiver who is dealing with a loved one who has dementia or any other disease you will feel moments of shame and embarrassment.  You can count on it happening! Why? Because we are humans and we have our shortcomings and because when we have someone we love who is sick our emotions will and can run the full spectrum of emotions.  Don’t beat yourself up over it.  Learn how to deal with it as best you can.  First and foremost learn about your loved ones illness so that not only you will understand what’s going on but also so that if the need arises you can inform others that your loved one has such and such disease.  It’s entirely up to you if you wish to do that last part.

They are sick and need your help and trust me, inside they are fighting the twin monsters of shame and embarrassment too!  I wish during those times with my mom I had shown her more kindness or at least tried to.  It took me a long time before I learned to go where she was and find some joy in the midst of all that ugliness that was her Alzheimer’s.  I wish I could’ve said “My mother has Alzheimer’s” when met with quizzical stares with my head up and now down.  It took me a long time before I reached that point.

This week their annual grave blanket with candy canes (mom’s fave candy next to chocolate) was placed on their grave.  Merry Christmas Mom and Dad.

 

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