Posts Tagged life

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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Fear

I know I’ve gone way off track with what my original intentions were with this blog but I hope you indulge my zigzagging 🙂  Sometimes when I think back on that awful trail that went from mom being mom to her being just this animated shell, I find myself thinking what could I have done better (which is nothing more than a lesson in frustration and futility) but lately I have thought about what she (and probably many others with dementia) may have felt like during this.

Mom was fiercly independent, could drive her Fords with the best of them (Dad used to call her lead foot), always made and kept that hair appointment like clock work, and at one time was quite the fashion plate.  Of course later after 6 kids she turned into a mom and wore jeans and sweats but they were always neat.  But when the Alzheimer’s started to take her away all of that changed.  She voluntarily stopped driving or maybe dad did some subtle suggestions.  At least we didn’t have to fight with her about handing over the keys like so many other families have to.  I don’t envy you who have/had to!

She kept the hair appointments for awhile and then that fell off with her resorting to wearing all sorts of hats.  Then she stopped bathing and would often take the dirty clothes out of the washing machine and put them back in the closets before dad had a chance to wash them.  And of course there was the phone routine as I’ve mentioned before where she would call me to look up a phone number for her using the excuse of she couldn’t find her phone book, read the print in the phone book, or just yell at me to do it because she was my mother and she was asking me to do it!  She used the guilt card as long as she could.

Sometimes she would look embarrassed when she would forget something and other times she would get angry…at one of us.  But in hindsight, she felt both.  She knew, for awhile anyway, that something was wrong and she couldn’t do or remember things like she used to.  Fear, anger, and embarrassment were probably all mixed in there and she had no idea how to handle it.  Adding insult to injury, we didn’t have a clue about what the hell was going on either so we had the same emotions going on except we weren’t the ones with dementia.  We could still drive and cook and do laundry properly.  All those skills were leaving her bit by bit and all she could do was thrash about in frustration.

I will confess to not being the kindest most sympathetic person in her world when she was going through the early stages of this.  I was dealing with raising young children in a crumbling marriage and having two sick parents (dad had diabetes) added to that mix made me a frustrated and angry person which sometimes came barreling out at mom and the rest of the world.  I had my fears too!  I was afraid that I would be stuck with taking care of them (which turned out to be about 80% true) I was afraid taking care of them would take a big amount of my time (it did) and I was afraid that I was losing my parents.  No matter what we may say or think or how old we may be, we will miss our parents when they are gone.  In this case my “mother” left me long before her body decided to leave.  I had a mom but she wasn’t mom.

Caregiving ain’t for wimps let me tell you but conversely, being the one cared for ain’t a walk in the park either.  Imagine having someone you gave birth to now doing for you what you once did for them – bathing, dressing, feeding, etc.  Imagine that you can’t do for yourself things that you have done for decades – dialing a phone, driving, playing a piano, baking the cake your other half has always loved.  And imagine leaving the home you once knew to live in a strange place with strange people who hopefully are going to take good care of you.  Heck!  I freak out when I can’t find my phone or keys or recall a name let alone having to deal with what those with Alzheimer’s and dementia must go through.  It is scary!  I wish I had known this when mom was alive and had shown her some kindness instead of my frustration.  Once I began to come to terms with mom and this damned disease I became kinder to her and in turn I wasn’t as angry or fearful.

Recently the hubby and I were leaving the grocery store to head to it’s gas station when I noticed an older gentleman wandering the parking lot searching for his car.  My dementia antennae went up!  As we pulled into the gas station I jumped out of the car to watch him wander back and forth among the rows of cars.  Finally I told the hubby I’d be back and I walked over to the man and with a warm smile I asked him if he needed help with his car.  He was embarrassed but I knew what to do.  I asked him what color was it and what make.  I made jokes about not knowing a Chevy from a Toyota unless I could see the name on the car.

I talked gently to him as we walked back and forth looking for his white Chevy.  Couldn’t find it so I asked him did he remember if he parked it close to the store or further back; eventually I asked him if his car had an alarm on it.  He wasn’t sure and said he just had new tags put on the car and that’s why he was confused (I knew that as a sign of embarrassment) as he handed me the keys.  Fortunately his keys had a button on them that when pressed would sound the horn.  I pressed, it honked, we found the car! He thanked me and apologized for not recalling where he parked.  I smiled and told him it was alright and we all forget where we park in these big lots sometimes.  But before I went back to hubby waiting at the gas station I showed him what button to push to sound his car’s horn if he needs to find it again.

He drove off slowly and I prayed he got home safely without hurting himself or anyone else.  Was he in the early stages of dementia or just an old guy with a momentary lapse in recalling where he parked?  Either way it happens and is happening across the globe…but I’m so happy I stopped to help him; to ease his fears that day.

 

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How does the caregiver feel about all of this?

When you are a caregiver to someone that’s ill, someone you love…how do you feel about it?  The emotions can run the gamut from feeling oppressed and depressed to feelings of martyrdom.  I’ve seen them all and have at one time or another felt them all.  Why? Because they were my feelings and my feelings were legitimate!

I was confused when mom first started showing behavioral changes.  I felt hopeless because not only did I not know what was going on but I didn’t know who to turn to.  I had others, including family members, brush her mental changes as being part and parcel of being old and that I was just a worry wart.  I knew something was wrong I just didn’t know what or what to do about it.

So like many of us who are afraid and confused only the outer symptoms were addressed (keeping clean, food intake, not letting her drive) but what was going on underneath – the heart of the matter, the meat and bones – was left to fester until it was too late.  Fear, ignorance, and denial are a deadly trio for anything in life.  Please don’t let that gruesome trio take you over in whatever you have to face in life.

Then panic set in as I realized she wasn’t getting any better and her behavior was getting worse.  “What are we going to do about mom?” I’d ask my sibling and dad.  And everyone had their own opinion but what I now know should’ve/could’ve been done wasn’t because of the evil trio.  So then it devolved into frustration and anger.  Those two emotions were because I felt I wasn’t getting any or enough help from my siblings or dad for that matter sometimes.

Frustration led to fatigue as I tried to do as much as I could with what I had along with living my own life, raising children, and working.  There were so many candle ends burned it was absurd.  Then when anger saw that my guard was down it slithered in and I began to get angry at the world and God for what was going on in my life; in my parents lives.  I was tired, angry, and many times in tears.

I forgot to mention embarrassed.  I didn’t know about dementia support groups at the time and when mom was still able to go out with us I was ashamed of her behavior and her outward appearance.  I would either walk ahead of or behind mom and dad when we all went out together because while I wanted to keep an eye on them I didn’t want anyone to connect any dots.

When my parents had to be placed in separate nursing homes I felt like I had failed some how to do better for them.  I felt angry that they let themselves get this bad health wise and at times I wanted mom to just die.  And do NOT get me started on dealing with legalities for them.  I was worn out because I was trying to be all things to and for them. I was desperate because I knew I was slowly losing my parents and I wasn’t even close to being ready to be an adult orphan.  In the midst of all of the turmoil I still loved my parents as I am sure you love the one you are caring for.

And I felt all alone because I was learning about how to take care of their needs physically and legally with on the job training.  I learned things the hard way at first because I didn’t know where to turn.  Eventually I found about the Alzheimer’s Association and found an online support group which saved my sanity and as time went on I learned what battles to fight and how hard to fight them.

So why am I telling you this? It’s because you too may be feeling any number of these feelings right now as a caregiver and I want to say that it is alright to have those feelings.  You are human too and the task you are undertaking is an enormous one.  You are doing things because you have to, you want to (and sometimes you really don’t want to have to), you need to and sometimes only you understand what you are feeling and going through.

No matter where you are in your job as a caregiver be it all alone or with an entourage of help and support, your feelings are yours and they are very legit.  There is no need to apologize for them nor to feel guilt or shame.  Keep doing the best you can…

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Would you want to know?

I’m taking a bit of a detour from the memoirs and presenting some information to you; information that is scary, hopeful, and well…informative!  Testing for many diseases exist that can range from a scraping of your throat, sticking that awful swab up your nose to test for the flu (when that was done to me I thought about that scene with Arnold Schwarzenegger in Total Recall), to blood being drawn to be run through a myriad of tests.  And in many cases we want and need to have those tests done so that we can treat the disease.  But what about for something that is much more daunting like cancer or Alzheimer’s?

Would you want to know if you were a high risk for such diseases as those before they ever began to manifest themselves?

Recently in the news Angelina Jolie had a double mastectomy in order to prevent the breast cancer that tests indicated she was highly likely to get; she has since announced she may have further surgery to prevent the high potential for ovarian cancer which claimed her mother.  Knowing that I had a high chance of developing any devastating disease, would scare the hell out of me to go in and be tested for.  But unlike with Alzheimer’s, there are cures for those cancers and some very good preventative measures which given the option I’d probably do.  But would I want to go in for a blood test that could tell me if I had a chance of developing this form of dementia?

Here are some articles about a possible blood test for Alzheimer’s here and here.

The key word here is potential.  The test is still being developed and as with many medical discoveries is in need of funding and more years of research.  But if it were a genuinely tried and true test, would you take it?  The aforementioned articles talk about if you knew would you change things about your life like what you ate, how you exercised, if you would have children?  What a freaking conundrum!  On one hand knowing your risk factor could help you in so many ways to modify your life; to make arrangements before they were needed and while you could still have control over things.  But on the other hand, life is short and precious and why should you wait until you have a horrible diagnosis before you learn how to live life.

We should take care of these vessels that hold our spirits the best we can anyway.  After all until science catches up with science fiction, these are the only bodies we are ever going to have.  We should carpe diem every chance we get instead of postponing doing this, going there, seeing that, spending time with someone, etc.

My family history contains one mother, one first cousin, and one maternal grandfather who had/have Alzheimer’s.  So far all things considered I’m pretty healthy for my age (and I am not about to tell you that number lol) but would I want to know?  It has been scientifically shown that sometimes the disease does run in families and sometimes it doesn’t.  That’s just how the genetic dice roll.  But would I want to know ahead of time? I unequivocally say NO! I’m anxious enough as it is just waiting to get my cholesterol numbers back from my physical.  I’d have to be sedated while waiting for those test results which could either free or condemn me.

I’ve learned since being a caregiver to not put off things and to enjoy life the best one can because there is no promise of tomorrow.  I could have a heart attack, get hit by a bus, eat some tainted food, or develop dementia.  I’d rather enjoy my life as well as I can and do my very best to stay healthy without having that manner of cloud hanging over my head.  Knowing that – if positive – ahead of time would send me into a spiral of depression which wouldn’t improve my standard of living one bit.  I can’t and don’t want to live in that kind of fear (even though sometimes I do)…I want to live, period!

But your mileage may vary and you may want to know.  And that is your right.  I just hope that as they work at improving this predictive blood test that they work equally hard at finding a cure.

So would you want to know; would you take the test? Please share your thoughts…

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