Archive for category health

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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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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You will be missed – But you are now free

This week a sweet cousin of mine passed away from complications due to Alzheimers.  And while we were not a pair of almost like siblings close cousins, I did know her.  Our family is the type that if you are family then you get a big hug anyway when first meeting and ultimately get invited to dinner.  I knew her when she was a sharp as a tack woman who dressed well and could get to anywhere she wanted like guiding me from my hotel to our Aunts house that first time I was in her town visiting.

When I got the news some 7 or so years ago that she was on Aricept because she was at the beginning stages of Alzheimers my heart just sank.  No! I exclaimed…not another family member.  At the time my mother was in the end stages of the disease.  The once vibrant woman was now less so and had to have one of her nieces live with her to help take care of her.  At that time she could still have a conversation with you – to an extent – but only for a short time.  Then she would either not really converse or do the usual for this disease repeat herself.

Eventually she had to enter a nursing home because her condition had declined to a level her niece could no longer care for her at home.  She held in there for some years until she eventually stopped talking, walking and ended up on a feeding tube in hospice.  This week she decided it was time to go home and while she will be missed – especially by her twin – we are all thankful that she is now free from this damn disease.

When someone dies from Alzheimers or dementia it is a mixed bag of feels.  Your heart aches because this person you knew and loved, no matter what their condition was at the time, is gone.  No matter how many days a week you took care of them or went to see them at a nursing home, when they are gone your emotions go every which way.  In my case I was happy I never had to set foot in that nursing home again! I was happy I didn’t have to see mom suffering!  I was happy I wasn’t tied to being responsible for her and all of the paperwork, etc. that was involved with taking care of someone sick who was never going to get well!  I was happy that mom was free from existing (it was NOT living) like that!

But I also had this strange ache that said no matter what condition she was in she was still my mother and while she was gone years and years ago from the disease, this “shell” that was still there that resembled her and liked chocolate who I called mom, was gone.  I have a feeling my cousins twin, other sister, and the rest of the family is feeling various degrees of this too.

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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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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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Paranoia

A blogger friend of mine recently wrote about the paranoia she has to deal with with her mother who is in an assisted living facility.  Things were occuring like – blaming the cleaning staff for hiding certain items and that they don’t want to come and repair a leak in her bathroom.  In both of these instances the staff hasn’t hid a thing and the maintenance folks have come many times to her call about said “leak.”

We all have our moments of paranoia.  We’ve all had the feeling that someone at work is out to get us or that a neighbor is out to make us miserable deliberately because they play loud music.  But it’s different with those who have Alzheimer’s and dementia.  I am convinced that it is a combination of things with their paranoia.  It’s the brain misfiring, it’s their fear of losing their mental sharpness, it’s embarrassment and probably more.

With my mother, she felt that when she locked daddy out of the house as he went outside to dump the trash that he was some terrible man who was trying to break in and attack her.  When I tried to take dad to the doctor one time she accused me of trying to take him away from her.  And there was the times when she would greet me warmly when I came to visit and would give me an armload of things to take home with me (her clothing, pots and pans, food) but by the time I reached the door to leave she’d snatch them back and berate me for trying to steal from her.

Sadly, it’s part and parcel of the disease and something that you as the caregiver will have to find a way to work with your loved one with.  For example, initially I would try to “reason” with mom by telling her that she gave the stuff to me; clearly I wasn’t and didn’t win with this.  Shortly thereafter I learned to come up with creative ways to handle her giving me things.

I would refuse by saying I had too many already or I would accept and put them down on a table in the kitchen and just act like I didn’t know how that pile got there either.  Sometimes if it was something I wanted I would put the item down and then later in my visit I would ask her if I could have the item I really liked it.  There was a 50/50 chance of that last method working but it was better than an ugly confrontation.

With “lost” things others have come up with ideas like “let’s clean up the house, mom” or “let’s fold up the clothing and put them away.”  Of course you can always resort to having one person take the loved one somewhere while you go through the home or room to hunt down the lost item.  But be careful with that method because those with dementia are very tied to their home/room and hate being away from it for too long.  Mom was notorious for wanting to leave the house to pay a bill as soon as it hit the mailbox but equally she wanted to rush back home.

When it comes to being locked out, as a caregiver always remember to take your keys with you so that you can get back in if locked out.  If you are helping someone like your parents as I was, then have a set of keys yourself (that in and of itself may take some doing, I was accused of wanting a key so that I could have my gang come in and rob their house) to let the person locked out back in.  This drove me nuts driving for almost half an hour to let my father back into the house.  Another choice is if there is a neighbor that you and your loved ones know and trust, give them a key to help let someone back in…or at least give them your phone number so that they can call you if something goes wrong and you are needed.

Paranoia happens – there are ways to deal with it.

 

 

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About Dad and that really wrong diagnosis

This past Sunday was Father’s Day and while I still miss my father, I wasn’t that broken up about it…this time.  How emotional I get about certain holidays and birthdays varies; I think I am moving on and I am not that saddened when these certain times come around.  Oh sure I still and will always miss him but I just don’t cry like I used to.  But on to what this post is really about.

Dad, like mom, was not about going to the doctor for anything.  Home remedies where their mantra even though they did take me to the doctor because I had asthma but as for them? Short of something major – and I do mean major like needing stitches – they never went.  So as mom continued to spiral down into Alzheimer’s, his body was failing him and an insidious disease was beginning to creep through his body.

I had noticed that dad was limping more and my concerns were brushed off with the cursory “I’m fine, just getting old!”  At the time he really wasn’t that old (late 60’s, very early 70’s) but I knew something was wrong; again as with mom not what.  Push came to shove and after some pleading and nagging and his realizing things were not getting better I found a doctor to take him to.  I believe he was an internist and I regret that I ever took him there.

Why? Well it took hell and high water to get him and mom to that office (I had to beg them for a time period when other people wouldn’t be there as by this time her behavior from the dementia was getting out of hand; more about that side of the visit later) and once there I had to stay out in the waiting room with mom to keep her from bolting or doing something not socially acceptable.  Therefore I couldn’t go back with dad to ask any questions or to express my concerns.

Dad was having great difficulty walking by this time which was so different from how they both had been a few years earlier before mom’s dementia came calling, when they used to go mall walking; and he often had to hold onto things like walls or chairs or whatever was handy to move around.  When he came out from the exam room mom made straight for him and began to tug at him faster than he could walk towards the door out.

I had to try and do three things at once: watch out for mom, watch out for dad being pulled by mom, and try to have a conversation with the doctor.  The doctor told me that he felt that dad had the beginnings of Parkinson’s based upon his quick assessment of taking vitals and watching him walk back and forth; he had the shuffle walk, stiffness, and poor balance which can be attributed to Parkinson’s.  I don’t recall if he was given a prescription or not although I do have a vague memory of trying to keep the two of them together at a pharmacy one time.

If there was a prescription given I am sure daddy took it for a few days, didn’t feel any change in his condition, and then stopped taking the medication – sigh.  As time went on his ability to walk became more and more difficult with him having to use a cane and then….  I will save the and then for a future post because guess what?  He didn’t have Parkinson’s.  It was something else, something that eventually took both of his legs and eventually his life – diabetes.  What he was experiencing were the nerves (neuropathy) and blood circulation in his legs being damaged by that disease.

What I am trying to encourage you who are at any stage of caregiving  is this.  No doctor on this planet is God.  They make mistakes and some of them are really crappy.  This doctor didn’t test dad for anything; he just had him walk back and forth.  I’m sure dad did not tell him everything about his symptoms and that is why I wish I could’ve gone back there with him.  Maybe if he had gotten a proper diagnosis the diabetes might have been controlled and his standard of living might have been better.  Maybe.  I implore you that have loved one you are caring for to do your damnedest to talk to their doctors (if and when you can get them in) about the symptoms and signs you see about their health.

True, medical professionals go a bit bonkers over patients who come in with a self diagnosis after having seen one commercial too many or after having surfed WebMD.com  but I’d rather you drive them crazy and ask them to rule out something than to miss it all together.  You have to be your and your loved ones advocate when it comes to medical care.  Doctors don’t always get it right, patients who are afraid, elderly, sick, or with dementia don’t always tell the full story.

When in doubt (and if you can afford it) get a second opinion!

 

 

 

 

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