Posts Tagged mental health

Coping, stress and caregiving

When I needed to get things done for mom and dad I was so singularly on task that I would go at doing what needed to be done for them for however long it took until there would be a break in the action.  I think there were times when I had an out of body experience almost when I had to do some very hard things.  There would be an emergency and I’d take a deep breath and part of me would step back while the other would dive right in.  I saw blood, pain, sadness, wounds, amputations, injuries, and eventually death and didn’t whine, whimper, cry, or even bat an eye when I was in the moment.

I once stared down a doctor who got snippy with me about a wound my dad had that wasn’t healing from his diabetes.  I was questioning  if amputation was really necessary; was there any other way.  He pulled back the dressing and  – well I won’t say what I saw but it wasn’t pretty – thinking it would just make me squeal like a little girl.  At that moment part of me stepped behind me and cringed while the other part of me was quite deadpan.  The amputation had to be done but I wasn’t going to let dad sign a thing until I was totally convinced there was no other way.  When it came to taking care of my parents I was a force to be reckoned with; no room or time to wimp out.

But what about when those moments were over?  Between emergencies I was in a constant state of stand-by.  Never turned off my phone, would be hesitant to go on vacation, neglected to feed myself sometimes, developed panic attacks which I never had before, had irregular sleeping habits, and sometimes would have bursts of anger and/or tears out of nowhere.  I don’t recall having any nightmares but I did have some oddball dreams once in awhile.  When my care giving days were over I sat there in a fog wondering what was I going to do now.  I had been so focused on my job as a caregiver that even though there was a sigh of relief over not having to do it anymore and that my parents were no longer suffering; I was lost.  I almost missed doing it and actually felt useless.

Even now when I see, read, hear of, or talk to someone about care giving or Alzheimer’s or diabetes I have a bit of a inner twitch; it pings memories.  I acknowledge those feelings and then they fade away – most of the time – unless it’s just one of those days where something as simple as  an old picture or seeing a mother and daughter out together for lunch sets me off and I fight back the tears…or just cry and cry.  And I won’t even mention the panic that seizes me sometimes when I can’t remember where I put the keys, someones name, a word, or why did I just walk into this room.  I have to go through my training and tell myself “You know the difference between just momentary forgetfulness and dementia, calm down!”

Being a caregiver takes a lot out of you.  You are taking care of someone but who is there to take care of you? We all need help sometimes and there is no shame in asking for or seeking out help.  In fact it’s one of the best and smartest things you can do; nothing embarrassing about admitting you need help.

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This is so embarrassing, mom!

Mom before she became ill used to be a pretty good housekeeper.  Let me rephrase that, she used to make me do a lot of the housekeeping.  She had, after five children me being the last at number six, perfected the art of giving a child chores to do while she sat and watched soap operas or visited friends.

Oh she still did their bedroom and the laundry and the cooking but the drudgery chores of dusting, dishes (we didn’t have a dishwasher unless you counted me), and every Sunday whether it needed it or not…mopping the floors.  When I grew up and moved away she was still pretty good with the housekeeping but after dad retired he ended sharing in the duties; eventually taking them over when she wasn’t cognizant enough to do them.

One of the first things I started to notice changing in mom besides her memory was her personal appearance.  Back in the day mom was a sharp dressed woman.  And by back in the day I mean before I was born.  She had her hair styled, wore pearls, and the fashions of the day.  She even had one of those creepy as heck fox furs where the foxes heads were still on and each head held onto the tail of the next fox.  Creepy!  But comfort took over fashion and right before the dementia came knocking she was into jeans and sweat shirts or some other style of comfy top.

But for a long long time she never ever missed a hair appointment.  I mean you could set your clock to her every other Wednesday hair appointment.  And then I began to notice the trips to the beauty parlor became less and less until she stopped all together.  She made all kinds of excuses (mostly about the cost) but she stopped going and started to wear baseball hats.  Huh?

She was still making the effort to stay presentable but then that started to going downhill too.  She’d throw a hat on her head without bothering to brush her hair.  The tops she would wear would be old and stained; items she would’ve pitched before or would’ve gone straight into the washing machine.  And then it got to a point where she would wear the same things over and over and over until dad or me or my sister would manage to grab the grubby garment and throw it into the washer.

And then even that became a game of cat and mouse as she would actually hunt down the item she last wore and put it right back on, taking it out of the hamper or washing machine if it hadn’t been turned on yet.  After awhile dad began to just give in and let her wear whatever she wanted if it made life easier for him.  It drove me nuts and was so embarrassing to be out in public like at the grocers and here was mom (who we had to keep an eye on to make sure we didn’t lose track of her) with her hair all sticking out from under a ball cap wearing jeans and a shirt that you could read her most recent meals off of.

I was torn between acting like I didn’t know her and trying to figure out what to say or how to react to the questions and stares that I think in all reality were just my imagination.  Dad and I both knew something was wrong with mom but neither of us knew what to do about it other than try and deal as best we could and to keep her safe and content because trying to get her to a doctor would’ve been like pulling hens teeth!

Now when I think about that day in Target where I rolled my eyes at her appearance I also recall that she began to like collecting shirts with funny pictures and sayings on them and at the time she still knew who I was, could talk even if it was repetitive many times, and could still do quite a few activities of daily living.  She was still mom even if she was unraveling before our eyes.

I wish I had know more about Alzheimer’s and dementia then and had taken time to help mother instead of being angry and fussing with her.  Being a caregiver can be so very exasperating at times…and it worsens when you are doing it in the dark.

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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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Societal feelings towards mental health

Individuals with mental health issues be it bi-polar, schizophrenia, depression, or dementia are still looked upon differently than say someone who has a disease like asthma or Parkinson’s.  It’s not as bad as when they had horrific mental institutes that they locked people away in but there is still a stigma attached to it in some places with some people.

Depending on ones socioeconomic status and what culture you may be from, how families think about and handle mental health problems can really vary.  Being in a lower income status may limit your access to information and care for mental health problems;  sometimes old wives tales become part and parcel of the diagnosis and treatment. And in some cultures they won’t even mention or acknowledge that a loved one has a mental problem.

There may be a tendency for the person with the illness to be taken care of at home by whomever is delegated to have that responsibility and that person may not have much information about the disease or the tools to properly take care of the person with the illness.   I’ve even heard of cases where even when the person with the illness was taken to a medical facility their family still wouldn’t mention by name what was going on and heaven forbid it was discussed outside of the home with friends or associates.   Even I was reticent at first to discuss what was going on with mom to anyone other than family because of fear and embarrassment.

In a phrase – its just something that is not discussed!  But thankfully it is getting better.

True, one may not be able to get the full battery of tests at the cutting edge research hospital if they are far from being rich but that doesn’t mean they shouldn’t be able to get the best care they can outside of going to a public clinic that may not have on staff the medical personnel that can properly take care of things.  I still feel to this day that if mom and dad had more than just their pensions and I knew more about what was going on they may have gotten better treatment in the earlier stages of their diseases.  Guilt is a bear…

One of the best weapons against Alzheimer’s, dementia, or any disease is knowledge!  There is great power in knowledge.  Not everything you read on the internet is gospel but it may be a jump off point to get you going in the right direction.  Find out where the local chapter is of your Alzheimer’s Association and avail yourself of it’s free information which runs from a support help line to pamphlets they can mail you to a library where you can check out books.

And don’t forget about the support groups.  But I must make a confession here about support groups.  By the time mom was in a nursing home and I wasn’t as frayed around the edges (but still unraveling bit by bit) every support group I found in my area did not fit my needs.  They all seemed to be filled with spouses or with people whose loved one was still in the very early stages of the disease; this was my mother and she had jumped into an advanced stage.

So I never went to one…but I did find an online support group that saved my sanity!  It met every Friday and it contained men and women caregivers and former caregivers from across the nation who were at all stages of the disease.  To this day I am still friends with two of the women I “met” in that group and we’ve all actually met in real life.

Don’t let embarrassment, shame, or cultural mores hamper you from doing the best you can as a caregiver for your loved one and yourself.

Alzheimer’s Association

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