Archive for category memories

A sad anniversary – Part 1

For me and for many who were touched by this horrific event.  On August 23, 2005 a storm formed in the Atlantic that would become the costliest and one of the five most deadly hurricanes in the history of the United States.  It was a monster!  But I was living in the Midwest and far away from this natural disaster.  I was dealing with something I knew would come one day but didn’t foresee it coming when it did or how it did.

My father had been living in a Veterans Home for several years and had already lost both of his legs to the ravages of diabetes and his kidneys were failing him.  He, being the stubborn man that he was, refused to get dialysis and truth be told it would’ve been a Herculean effort to get him to dialysis anyway.  The home didn’t have the facilities for it and it would’ve required him going some miles away to a hospital that would do it, stay there for hours, and then be transported back – yet another thing the home wasn’t capable of doing.  I was told that not only would the trip be very hard on him but so would the treatment and that when he would return he would be so spent that it would take him just enough time to recover…to be ready to do it again.  I didn’t want to put him through that so I relented and didn’t fight him on his decision.

You see, his home was about an hour and a half drive away from where I lived.  The reason he was there is that initially he was in a regular nursing home close by but he and I both hated it and the cost of care for him and mom was awful!  I applied for him to be in any Vets home with the idea of just getting him in the system and then transferring him closer when an opening arose.  Eventually an opening did come up close by but by that time he had gotten used to where he was (he even had his own private room -score!) so he remained there.  He was having bleeding problems and had been going back and forth to the local(ish) hospital and it was wearing us both out!  I had the chance to accompany the then husband to a meeting at a resort but I was torn about staying home just in case Dad needed me or to go and give myself a break.  I went…and I regretted that decision.

It was at a meet and greet party that I kept stepping out of to call and check on my father when I was told that he was getting worse and what did I want to do.  Long story short (and to be honest a lot of my memory of that night is a panicked blur) I said put him in an ambulance and get him to the big hospital near where I lived that had done some surgery on him before and do it now!  It involved a lot of phone calling with that hospitals ER department, asking if a certain renal specialist was going to be available, begging with tears in my eyes over the phone for an ambulance service to take him on that hour and a half drive to the hospital…and then me agonizing over if I should leave the event and go be with him.  Once he was transferred to the hospital I spoke with the attending who said he was lucid and talking and I could relax. Me? Relax? Hell no! Screw that!

I was in the hallway outside of the party when I just slid down the wall and began to sob; my body just quivering from the weight of it all.  Strangers were stopping to try and comfort me fearing someone had hurt me but I was crying so that all I could do was just shake my head.  I paced the floors of that resort almost the entire night trying to get a clear mobile phone signal where I could before I finally said we are leaving I have to be with my father!  I’m not sure when it happened but somewhere in all of the phone calls his doctor told me that he threw up blood that looked like coffee grounds and that he lost consciousness.

The resort was a 2+ hour drive away from the hospital and there was some speeding done; I am thankful that one state highway patrolman just told us to slow down and didn’t arrest or ticket us.  When I rushed into the hospital, my father was in the ICU hooked up to all manner of wires and tubes that beeped and pinged…and a ventilator.  I stopped crying and shifted into ferociously protective daughter/caregiver mode.  I was told that it didn’t look too good for him and that I probably should let him go.  Wrong thing to say to me people!  I asked how long could he stay on the ventilator before he had to come off.  I had a week; a week to figure out what to do, how to approach it, research options, make plans and backup plans for those plans, spend every day at his side, snarl at some condescending medical folks (don’t ever piss me off when it comes to the care of someone I love) pray and watch the television in his room that was on constant loop of – you got it – the coverage of Hurricane Katrina.

It was like watching the proverbial car wreck.  Everyone in the ICU unit had it on and we all just couldn’t quite turn away from it; it was a morbid fascination.  I too watched and couldn’t believe what I was seeing on the television as I was trying to hold it together for the man in that hospital bed who I felt I had somehow failed; who I hadn’t spoken to when I could still talk to him because I was so busy trying to figure out what to do for him… and now I could no longer hear his voice.  All I could hear was the news report of Katrina and the machines that were keeping him “alive” making their noises.  Some days when I would sit there with him and talk to him, stroke his hand or hair or pray that a miracle would happen, I would switch off the television entirely or turn it to another channel.  Let me tell you, it was hard to find something else to watch what with it being on every major channel and hospital televisions aren’t known for having a lot of viewing variety.

Even when I would change the channel or turn off the TV, if I left his room to go get something to eat (I didn’t eat much during this period – I had no appetite) or to just go for a walk, when I would return someone would’ve switched it back to the coverage of the hurricane.  And what was shown was a nightmare!  I had been to New Orleans and here I was sitting with my father who was dying watching the destruction and deaths of others.  I recognized areas they were showing, I had eaten at some restaurants that were destroyed, the bottom level of the hotel I stayed in was shown on fire.  It was a horrible situation all around…and I watched parts of it in surreal amazement while I was still holding on to my father with the hopes of a child wanting daddy to come back.

 

 

 

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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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Today is the day…

Today, five years ago, is the day that many of us who are caregivers either dread or are happy that it has finally come.  Today was the day that the battle of mom vs. Alzheimer’s came to an end.  We all know who won that fight and until they find a cure Alzheimer’s will always win that fight and take with it the person we once knew but will always love.  They say that when someone is ready to pass on that they either hold on until everyone they care about has come to say their goodbyes or they hold on until those who they are about to leave behind have made peace with the whole thing and are ready to let them go.

In the case of mom and dad I waffled around with letting them go or not.  There were some days in fits of frustration and anger that I cried out for God to come and get them and get them now!  I’m glad the almighty chose to just shake his head at me and let them live on awhile longer.  Because once I got past the frustration phase of being a caregiver (well, not entirely past there were moments when I still got pretty damned bent out of shape) I found my way through and learned to live in each and every moment I still had with them.  Take note of that!  It is important to live in the moment with them because that is all you will have.  In dad’s case because he could still talk to me up until his sudden downturn; I held on for dear life with him.  With mom, because the disease had taken her away from us all years earlier I wasn’t clinging as hard.

Mom decided when she was ready to check out by slowing down her intake of nutrients until she stopped entirely.  Her advanced directive stated that she was not to be tube fed nor resuscitated if her heart were to stop; you may chose differently.  So when she stopped eating and drinking we all knew it was just a matter of time until her tough old broad body finally stopped working.  I am very thankful for the magnificent hospice people who took care of her (and me) during this time.  I don’t think I could’ve made it as well without them.  They bathed her, spoke softly and kindly to her, and made sure that when her time was near that there was pain medicine for her.

I came every day that last week of her life and could do nothing more than pat her hand, kiss her forehead and tell her she was good to go; I was cool with whenever she wanted to leave.  I will admit to some moments of panic when I would call the hospice folks and beg them to send someone out to sit with her at some times when I couldn’t be there.  For some reason I had this fear of her dying alone without anyone there who cared about her.  Not that some of the nursing home staff didn’t care it’s just…well it was this paranoia I had.  As it turned out on this day one of the hospice ladies was there to bathe her when she noticed the shallow breathing and then the last little exhale.  She didn’t die with me around but she didn’t die alone.

The phone rang that early morning and I knew right away what it meant before even answering it.  I threw on my clothes and rushed to the nursing home where they kindly pulled the curtains around her and gave me the privacy I needed to say goodbye to her.  They even brought me in a muffin and some juice; not that I had any appetite then.  I touched her hand one last time and noticed it was still a bit warm and then I said goodbye and proceeded to deal with all that was needed for the next and final phase of being a caregiver to her.

Funny thing, I never really had a good cry over her.  Well, maybe sometime later I did I don’t really recall.  That moment when you have that soul purging cry can come at any time and not always when you expect it!  As Alzheimer’s had taken what was “Mom” years and years ago, this was just her body leaving to go be with her mind.  I had been grieving for 15 years by this time so I guess I was almost grieved out…almost.  Losing a loved one to Alzheimers/Dementia is never easy and I would suppose that depending on the relationship (spouse, parent, child, grandparent) how one handles it and grieves varies.  Just know that you can and will get through this stage of caregiving and that you will never forget and always love that person.

(I know I’ve jumped all over the place with this blog.  My original intent was to stick to the timeline of my time as a caregiver but we all know how that’s turned out 😉  Will try to get back on the timeline with the next post.)

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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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Oh those bizarre habits!

Why it happens I don’t know and I’m not even sure the “experts” know either but besides screwing with the ability to remember things, dementia messes with the person in many other ways. They can become more paranoid or they may go from being mean to lovey dovey and vice versa.  Some change from being neat to being super over the top neat or conversely – very sloppy.

My mother went from being neat and clean and nice (but never warm and fuzzy unless it was with the grandkids) to being so terribly messy, unkempt, and eventually she went through a phase where she wanted to hug and kiss everyone. Oddly, that lovey phase just was weird because for my entire life she was never like that and it just made me uncomfortable. Sad but true.

I’ve seen where the one with dementia would gain weight not because they were that hungry but because they couldn’t remember eating and would eat again thinking they hadn’t eaten or that someone had refused to feed them.  Mom didn’t have that issue.  Fortunately something in her told her to stop cooking and dad took over that task (although I’m not sure how well they were eating as he was getting sicker too) but even with that she began to exhibit odd behavior with meals.

If she ate something and got the hiccups or a bit of gas she would refuse to eat that food again!  Funny, she could remember that something gave her an upset stomach but the rest of her memory was misfiring.  Or maybe it was that she was saying all of those things upset her stomach and she limited her diet to the few things she could remember.  Either way, her diet dwindled down to bottles upon bottles of Pepsi Cola (that was the only cola she would touch) and peppermint candies.  Dad did manage to get other food in her but their trashcan would be filled to the brim with empty cola bottles and the floor around the indoor wastebasket was littered with the peppermint wrappers.

When they had to go into nursing homes and we cleaned out their old house there were so many bottles and wrappers in there I had to resort to using a snow shovel to scoop them all up!  Another behavior change was that she would get confused about temperatures; either over dressing in layers when it wasn’t that cool or she would fiddle with the thermostat and turn the furnace up to just this side of Hades even in the summer!  That last habit proved to be very dangerous later on.

As a caregiver – be it living with your loved one or having to stop by often to check up on them – your work will be cut out for you and my best advice is to get help!  If your loved one doesn’t threaten to clobber you and the person/s you hire to come in to help out (like mom did to me and an agency I enlisted to help – that was one ugly scene!) and you can afford it – do that!  Enlist the help of other family members if you can and they will actually help you.  When all else fails, prioritize!  You can’t and you won’t be able to win them all; work with what you can as well as with what is most important.

Remember – if it comes down to your loved one eating the same thing every day (as long as it’s not unhealthy for them) versus an outright battle, let them eat the same thing!  You might even be able to sneak in some other food if you can disguise it enough;  think how some parents have to try and get veggies into their children.  With bathing if they refuse to get into the tub or shower then go with sponge bathing.  If all else fails gather up your strength for a mighty once or twice a week bath or shower fight.   You will both be less stressed if you attempt this once or twice a week instead of every day.  There’s grubby and there’s GRUBBY!   You will learn to differentiate.

That reminds me of something.  Mom hated taking a shower in the nursing home to the point that they had to give her a mild sedative (how I hate the memory of that) to get her in the tub but one day an aide decided to take her and put her in the whirlpool.  She liked that so much that they no longer had to give her any medication to take a bath.  So maybe switching from bath to shower or the other way around could work for you.  All you can do is try and realize you aren’t a failure at being a caregiver if something doesn’t work out…you just found something that didn’t on the way towards what will!

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Missing you…still

Sorry I have been gone for an entire month (give or take a few weeks) but things were happening and I just could only focus on so many things at a time…and then I realized it was “that” day again.  My caregiving days have been over for four years for my mother and nine years for my dad but those memories and scars still linger to this moment; they will never go away, they just get less painful as time goes on.  In preparation for some remodeling I have been girding up my loins and going through the house getting rid of things that either needed to be donated or just thrown away.

Let’s just say the big trash can was very very heavy by the time I was through.  A couple of the boxes I went through and consolidated into one contained things that belonged to both of my parents.  I was actually able to get rid of some more things this year.  Right after they passed away I clung to their belongings as if through them I would have some psychic link or something like that with them.  I didn’t want to totally let go – I felt that it would be callous of me if I did.  But that is just another stage of grieving and eventually as time has gone by I have gotten rid of more and more of their belongings…but I will never get rid of it all.

I’ve gotten much better with feeling blue when it’s their birthdays, certain holidays, and the days they left this world.  I still cry a bit and there are often big sighs as I look at their pictures but then I get back to the here and now and acknowledge that life goes on.  This time I almost forgot it was the day that I watched as my father’s spirit departed his body (yes! I’m pretty sure I saw that happen!)  If it hadn’t been for something someone else posted about hurricane Katrina I think I might have let the day slip entirely.

Dad was in ICU on life support as the news covered that horrible event of Katrina and it’s aftermath.  I cannot separate the two in my head anymore; they are entwined with each other forever.  But it all came back to me as I was rummaging through the boxes and decided what stayed and what went.  For someone who often forgets where she put her keys and you don’t want to know about how many times I forget where I left my phone, as I went through their belongings I could remember where things came from, when I gave them to them, and where they were placed in their rooms at their nursing/veterans homes.  Funny how memories can be, huh?

And then there was this one plaid shirt that belonged to daddy.  I looked at it, saw my handwriting in the collar of it to help the laundry room folks know who it better come back to, and then it was put it in the throw away pile.  By the time I was satisfied that I had culled the herd enough for this year and was getting ready to put “their” box back into storage, I had this pulling sensation inside that whispered to me that I needed to keep the shirt.  I picked it up and held it for a minute before I realized that this had been a favorite shirt of his before he took ill.  In the box it went.

A couple of days later I was going through some old photo albums taking cell phone pictures of some of the photos to send to my son.  He loved the ones I sent him of him with his grandparents when he was a child.  And then there it was!  A photo that I had totally forgotten about.  It was my dad, my son, and some other relatives sitting around in the living room playing a game and guess what dad was wearing? That same plaid shirt I almost threw out!  All I could do was close the album, put it away carefully, and cry.  I’m so glad that I didn’t throw that shirt away.  Maybe one day I will but not this time – not this year.

You are still missed and will always be loved, daddy.

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