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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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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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Mother’s Day and Dementia

Mother’s Day is just a few days away and while some of you are pondering what to give mom it made me think about A. how I still miss mom and B. what can someone whose mother has dementia/Alzheimer’s do for them for Mother’s Day.  It really all depends on what stage they are in.   In the very early stages you can go about celebrating with mom as you always did; perhaps with a bit more patience if she has gotten foggy in the memory bits.  But this is the time to treasure with her because it will only go downhill from here.  Sorry to say that but we all know this is a disease that while we may keep it at bay for awhile in the end it creeps in and over.

As she progresses you might have to be very careful if you are a family that celebrates by taking mom out.  She may have reached a stage where anxiety about being out in a crowd can be daunting or she may be aware of her “shortcomings” and prefer to celebrate at home instead of being out some place.  I truly believe that those with dementia who are self aware have moments where they know what they are and aren’t capable of and would rather not have to have a moment out in public.  I know my mom was embarrassed about not being able to do something as simple as look up a phone number in her own handwritten phone book so instead of dealing with the frustration she would call me and frustrate me instead to look up the number for her.

If you normally celebrate at home or have to do it there (or in a nursing or assisted living home) then keep things simple.  As time and the disease progress, having too many people around and a lot of stimulation can be a double edge sword.  On one hand it is good to be around those who you love and love you and in some cases it brings the loved one “out” again but over stimulation can also lead to anxiety and potential behavioral issues.  As the disease gets into the later stages your celebrations may be limited to just a few people or just you and mom.  Which leads us into what to give a mom with dementia?

Again, it depends on what stage she is in.  Flowers are always nice as are balloons and cards but don’t be shocked if the woman who once loved these things looks at them with disdain.  Behaviors and likes and dislikes change with the disease.  I will say that candy is always a winner no matter what the stage unless of course they are in the late stages and cannot have candy or they never liked it in the first place.  Up until mom was no longer able to chew and swallow, she loved chocolate!  So I always brought her chocolate and fed it to her in small little bits.  Seeing her smile and chew away happily always made me smile even though I knew she hadn’t a clue about who was feeding her.  I also would buy her the wildest t-shirts I could find when I went traveling.  She had no idea what they said but the staff knew her daughter cared about her and had a weird sense of humor.  Your mom might like a favorite meal or to hear music she’s always loved instead.  Thoughtful creativity may have to come into play.

In mom’s early stages I gave her cards and – surprise – chocolates.  She would smile and thank me and dive right into the chocolate.  Once she was in a nursing home I brought her cards and balloons but they were mainly for me; to show others that she was not left in the home and that she was still cared for.  They made me happy even though she never noticed them.  Of course we know the chocolate was still a winner until…  That last Mother’s Day when she was on hospice I still brought her some balloons to tie to the foot of her bed.  I needed something cheerful in her room at that time and I wished so much I could feed her chocolate one more time.  She died a few weeks after Mother’s Day and I packed away all of the cards we had taped to her wall and put them in a safe place – sigh.

Whatever you do for your mother for this day depends on you and where your mom is with the disease but I can say this with 100% assurance – the best gift for her is for you to be there for her and with her and to show her love.  Even if she doesn’t or can’t respond I firmly believe that in there somewhere she feels it.

 

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Would you read it? Would you go watch it?

There have been a few (many?) movies and books where the main topic was about someone with Alzheimer’s or there was a prominent character in the story with dementia.  Let’s not forget about the books written by someone with Alzheimer’s too.  But as shown by the topic of this post….would you?  Would you, could you read that book or go to the movies to see that movie?  Let me clarify something for a moment, I am not referring to any books that are meant as a help or guide for someone who either has dementia or is a caregiver.  Those books I have read!

No, this is about fiction and non-fiction dealing with Alzheimer’s.  A few books are: Dancing on Quicksand A Gift of Friendship in the Age of Alzheimers by Marilyn Mitchell, Still Alice by Lisa Genova (now a much touted movie), The Notebook by Nicolas Sparks (also a movie), and Elegy for Iris by John Bayley.  I am sure there are many more but these are just a few.  A few movies are: As previously mentioned Still Alice and The Notebook, Iris: A Memoir of Iris Murdoch, Away from Her, and Still Mine.

Have I seen any of these movies or read any of these books? No.  Why? Because I cannot bring myself to read about or go see a movie about something that I watched for 14 years take my mother away from me.  I could probably write my own damn screenplay but then again, couldn’t all of us who are/were caregivers or are dealing with the disease itself?  I went to see the remake of Planet of the Apes where the actor John Lithgow, while not a major character in the movie, was a bit of the spark for what led the apes to become what they became.  He was portraying a person who had Alzheimer’s.  And you know what happened?  I freaking cried in the movie!

Did not see it coming; was totally blindsided by this emotional outburst.  To this day I have no idea why I started crying but my best guess would be that seeing his decent into the disease and his eventual death reminded me of my time and of a hurt that while I thought I was somewhat past it all, I apparently was not.  And that is why as much as the books and movies may be great and Lord I hope they can do something positive to increase awareness (and funding) for a cure/help for the disease, I cannot deal with them.  They remind me too much of what I lived through and frankly, I do not like crying into my popcorn!

I was recently blindsided (again – geeze!) by a post I read.  It was on the blog of, Frangipani, a woman in Singapore whose mother has dementia.  She  had a link on her post to the blog of a woman who is dealing with early onset Alzheimer’s.  Gill – of Before I Forget – lives in England and wrote a post about how the person with Alzheimer’s feels about the trauma we caregivers feel about taking care of them.  For one, it was wonderful to read about Alzheimer’s from the other side of the fence (my mom wasn’t able to fully communicate her feelings but there were days I could sense it) and it was an eye opener.  And it was also another Ninja attack right between the eyes for me.  Didn’t see it coming and sure as hell did not see the floodgates of emotions it unleashed.

Her post took me right back there to being a caregiver and the things I said to and around my mother somethings that at first were really really horrible and then slowly changed as she became worse and I learned better – not totally – to accept things as they were and were going to be.  I ran upstairs to where my husband was cooking dinner (yay for him cooking!) and just sobbed I needed a hug.  Him being analytical is asking what? What happened? I couldn’t explain I just needed a hug and finally he caught the clue and held me as I sobbed about some guilty feelings that I thought were long gone…apparently not!

So that is why I cannot read these books or go see the movies.  Maybe one day, maybe not but unequivocally not happening now!  It’s interesting though that I can read blog posts much more readily.  Perhaps it’s because I feel they are more “real” and that I can comment and even start a conversation with them if we both choose.  Sometimes I feel that maybe I am in some way helping by leaving a comment or a word of encouragement.  So returning to the title of this post – would you, could you read these books or go see these movies?  Or have you already?  Tell me why you have or haven’t.

 

 

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