Archive for May, 2014

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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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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Before the darkness came…

Yeah I know that was melodramatic but that is how dementia and Alzheimer’s is, it is a darkness that looms over everyone’s heads.  But I want to talk about the light instead of the dark; tell you a little about mom before she was stolen from us especially since this weekend is Mother’s Day.  Let me first say that mom was by no means a winner for mother of the year.  She did some things that I don’t want to talk about that weren’t always the nicest or best to do.

She could tan our hides with a spanking, made us do all kinds of chores while she sat and relaxed, made me clean the fish that she caught when she used to go fishing with one of my sisters (oh how I hated doing that with a passion!), was overly protective and didn’t allow me to do some after school activities in high school, and got into a major row with me on the day of my first wedding. Sometimes mom was all about mom but I want to show that she was a mother to me in the best sense at times before she became ill.

She did do some very motherly things in her time.  I can recall having the measles and being bored out of my mind stuck in my room so she made a bit of a bed on the sofa and let me lay down there to watch television.  She wasn’t able to travel when she had all of my siblings but when it was just me, she sparked the travel wanderlust that I now have by taking road trips out west.  And she could drive with the best of them! Lead foot is what daddy used to call her.

I got to see things that many of my friends in elementary school wouldn’t get to see (if ever) until they were adults.  Part of the reason we went out west a lot was because at the time I had terrible asthma and doctors told her that being in the Arizonan climate would be good for me.  They were right.  So before I was even ten I had seen big cattle ranches in Texas, spent the night in a log cabin near the Grand Canyon (I also nearly gave my mother a heart attack when I tried to climb between the railings to peer into the canyon), had a blast at Disneyland, saw them making a movie in Old Tuscon with Angie Dickenson and Robert Mitchum (who waved at me), and nearly gave mom another heart attack by crawling into one of those Indian cliff dwellings in Arizona even though the sign clearly said Beware of Rattlesnakes.

Mom took care of me through all of my injuries and sicknesses – with a serious side of being fussed at about them – the best she could.  There were many trips to the ER for my asthma, a broken leg, stitches in my hand from a broken glass while doing the dishes, and your usual sundry mishaps that many children go through.  But she also pawned her wedding ring to help pay for some of my medical bills because money was so tight.

When I first made her a grandmother she transformed right before my eyes into a sweet and loving woman.  Who are you and where is my mother I thought.  You see mom was never vocal or demonstrative in her showing of emotions except to dad.  I really cannot recall her ever saying I love you to me or being that touchy feely, but with her grandchildren? Oh yeah!

They could do no wrong and she would cook their favorite things for them to eat when we came to visit.  Dad taught them how to play (and cheat at) poker and she would talk your ear off about them to others showing their pictures to you.  She didn’t have an accordion of pictures that fell from her wallet like you’ve seen on some cartoons but she did have a few.

Once when she was holding my then newborn daughter for me at the mall while I went into a store for something she disappeared and sent me into a panicked frenzy when I couldn’t find them.  Turns out mom was walking up and down the mall showing off her grandbaby to anybody she could corner.

She always, up until dementia took her, had a smile and a big hug for her grandchildren but I’m at a loss to recall getting hugs from her.  It broke my heart to see my children – the youngest grandchildren she had – lose their grandmother when they were so young.  Oh she was physically still there but that was about it.  But to this day my son can still recall her spaghetti and carrot cake fondly and that makes us both smile.

So for this week I too would like to remember the better things about mom instead of the Alzheimer’s.  Happy Mother’s Day mom and Happy Mother’s Day to all of you.

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