Posts Tagged family

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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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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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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Being the responsible one…

I’ve been busy with life and trying to enjoy myself as much as possible but whenever my ears perk up at the sound of a conversation about caregiving I’m right back in the moment.  Case in point, while waiting to board a plane I overheard this woman talk about being a caregiver to her widowed father long distance.  Her caregiving was compounded by her own health issues which included some shoulder problems.

She was telling this young man all about her health issues and how she wasn’t able to lift her dad; how they had a home health worker to come in to do that for his bathing, etc.  and how she was probably going to end up moving out to wherever to help her sister with him.  I thought the young man she was talking to was someone she knew but as he said his goodbyes he was just an ear to bend for her.

Well someone else came up to her (merely to check out departure times) and away she went telling the same story again.  I began to wonder if this woman had any other life than talking about her health and the health of her father.  Seriously.  But I can understand…a little.  I feltho a bit ashamed when I had thoughts about the poor person who was going to be seated next to her for a four hour flight.  I know, shame on me.

Then there was this meeting I attended where we were congratulating someone on being promoted and being transferred to a different state.  I had a chance to talk to her later that day in private when she mentioned that she had to tell her family that she was doing this transfer for herself and her life.  Their jaws all dropped because – guess what – she was the responsible one for taking care of her father.  Mind you, she had help from her siblings but the majority of the responsibility was on her.

She had “the chat” with her family members and told them that she was the only one looking out for her (she was a divorced career woman) and that she had to do for her.  Eventually they saw where she was coming from and they will have to figure out how to do things without depending on her.  Amazing, but really not so, how when it comes to caregiving there is almost always some one individual who is THE responsible one.

Often that responsible one puts various degrees of their lives on the shelf in order to do that job; I did.  Oh I tried to juggle the whole scene of wife, mother, employee, sibling, caregiver as best I could but in the end all of the hats I wore suffered some in quality as I tried to be the best caregiver I could for my parents.

Being the responsible one is a major task that many do not fully understand the ramifications of unless/until they too become that person.  After my tour of duty as I call it was over, I didn’t want to be responsible for anything for awhile even though I had become so used to calling the shots that I would often have a tug of war with myself over letting go or keeping the control.  Being responsible is a weighty task physically, mentally, emotionally, financially, etc.

Are you the responsible one?

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How do you tell them? How do you ask for family help?

I was going to proceed with the progression of life with mom and dad as their health spiraled out of control but a good thing happened yesterday.  I was a guest speaker (I suppose that’s what you could’ve called me) at an online Twitter chat – #AgingChat to be exact (I do recommend those of you with a Twitter account to follow it and @Beclosedotcom)  The topic was “Is it Dementia or not?”

It was a great chat but what pinged me the most was two questions: 1. How do you tell the one who is ill that they are ill  and 2. How to you get  family members to help out.  For question #1 the best things suggested was to either let their doctor tell them or to sit down with them in as calm a voice and manner as possible and try to let them know your concerns without sending them into a panic or giving them news that may be interpreted in a very very bad way.  Remember, when trying to tell someone you think they may have some serious memory issues that can be absolutely terrifying to them; the could react angrily or burst into tears or any other combination of emotions.

In my case when I tried to tell mom as awkwardly as I could at the time not knowing what the hell I was dealing with anyway, mom nearly bit my head off!  She became like a cornered animal claiming I was out to get her, get into her business, and try to say she was crazy.  I backed away as fast as I could and gave up trying to convince her she needed to see a doctor.  I wish I had had more resolve to keep plugging away at getting her to a doctor.

But what about asking for help from family members?  In some wonderful families there occurs this thing called a family meeting where everyone who is/will be involved get together and they hash out how things will be handled.  Sorry to be so cynical but in my lifetime I’ve only read about this; I’ve never heard directly from anyone who had a cohesive family unit deal with someone ill or with dementia in an evenhanded manner.

Nope! What I dealt with and what several people I’ve known have dealt with is one person being THE responsible one with others helping occasionally (sometimes after being upbraided by the responsible one) or with family members either saying they will help and don’t or just make all sorts of excuses to not help at all.  There is always a blow up or two..or three or four when you have these family dynamics going on.

When I first tried to talk to my siblings about mom I got a bit of a brush off with phrases like “Well she’s old what do you expect!” and “Heck, I forget things and repeat myself too!”  I’m sure some of you have heard things like:  I don’t have time to take off work to help.  I’ve got a family at home to take care of.  I don’t like the looks and smells of a nursing home.  S/he isn’t going to know I visited or not (cringe). I live too far away.  This also may apply to some spouses/significant others.  Sigh…

At first I had one of my sisters help me out pretty often but as time went on that lessened, another would only come visit mom if she went with the other sister, and two lived out of state and only were able to make phone calls.  I appreciated those phone calls.  They let staff at the nursing homes know that I was not alone in caring about moms care.

Ultimately everyone I’ve known who has been in this situation tried with family members the best they could until an explosion or until they reached a point where they tired of dealing with the stress and drama and just dealt with it themselves.  About this time is when hired help (if affordable) such as a visiting nurse or aide or adult day care comes into the caregiving equation or the caregiver gets very very tired and stressed themselves.

But as I’ve said before, you have to push through and you will push through.  Trust me on this.  Ask the family doctor for tips on how to bring up your health concerns to your loved one.  Seek the assistance and experience from agencies such as Alz.org who have a hotline number that is 24/7.  Find either an online or in person support group.  And try to talk to family members about helping out or what to do but know how far to go not so much for their sakes but for yours!

 

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