Walking alongside Dementia

One must embrace grace to face this journey;

and once grace is grasped, mercy unfolds.

Up until now, I have been very discreet about sharing the difficulties of this challenge in our lives.  It is a sensitive topic.  Shame and embarrassment become the hidden secret, but if it lurks too long in the darkness, turmoil takes over.  I feel it is time to shed light upon the circumstance.   I have prayed about if it is appropriate to share this troublesome journey on a public forum such as this blog.  After reflecting on it, I have 2 reasons for choosing to share:

1.  Family members.  I know that friends and family drop in here to see how things are going.  I am pretty candid about our lives, and have a tell-it-like-it-is style… This will be a way for loved ones to really know what’s going on.

2.  Encouragement.  For those who are facing a similar course in life.  Whether it is themselves, or a loved one who are traveling down this path.

In the beginning:

Grandma M- a strong willed, hard-working, spunky-humored lady.  Opinionated at times, gracious and charming at other times.  Has a dedicated heart to those whom she truly loves.   Lived alone and independently, living the American dream of owning her own home and living comfortably within her means.

LOVES her kids first; grandkids 2nd; me, not so much.  Understandably in the beginning.  Her troublesome son whom dropped out of school went off to finish highschool at his dad’s house.  Relatively soon after graduating, this 19 yr old son met a 22 yr old gal with a child.  2 yrs later we married.    I soon realized that I would never be good enough in her eyes.  Over the years she continued to ‘pull me aside’ for ‘a talk’ when she would visit.  This shower is unsanitary, you really should learn how to cook, you really need to do something about son #3 hitting his older brothers, this room isn’t clean enough for me to sleep in, when are you going back to work, etc…

Are children a blessing or a burden?

Grandma M accepted our Joey from the beginning.  I think maybe because she saw how in-love her son was with him (btw, dh completely fell in love with my baby Joey, 9months, before ever falling for me).  To this day, Joe is a favorite.  I could pretend it isn’t true, not be so brutally honest… the other kids already recognize this… it is what it is.

Nick came along next and she treasured him.
TJ was next, and she was hesitant.  “A 3rd child?  really?  Well, I hope you can afford it.”
Katie… although appalled at us choosing to have another child, she softened when she realized it was a girl.
Andrew- quite disgusted that we would have more children.  “I just can’t afford all these kids”  ???
Bryson:  ba-ha-ha… I wasn’t going to tell her, lol.  I made Fred do it.  *smile*  Basically threw her hands in the air.  1 day after he was born I given one of those ‘talks’.  “I hope you are done now.  You are going to get fixed, do something to avoid this right?”

Now to be fair, Grandma M just simply is not a ‘kid’ person, and that’s ok.  But… she really does LOVE her grandkids, she just thought we, the parents, were crazy for wanting so many of them.

A few years ago:

With the loss of her 30 year career came the signs of oddities.  Looking back now, one has to ponder whether the oddities began because she lost her job, or if she lost her job because of the oddities.

In a few short years, so much has happened.

Grandma M lost her job; Chanelle (my lovely s.i.l.) had moved back from Ireland.

Chanelle purchased Grandma M’s home so that she wouldn’t ‘lose’ it.

Being a financial burden on Chanelle, we moved in for a season to help til it sold.
(recognize at this point that Grandma M went from ‘alone’ to
8 extra people in her 3 bedroom home, 5 of them being children no less!)

Sold home again, tried living in an apartment on her own, Dr appts to unravel the mystery began.
“depression” was diagnosed, but the oddities were increasing none-the-less.

no job, no income, savings dwindling… we offered her to join us when we moved back to our small town.

Admittedly, I was a bit surprised she accepted our offer.  Moving from the only area (big city) she has ever known to live with a houseful of children (in wee town nowhere).  But the cost was in her favor- free.

In this past year alone:

Has lost most daily living skills;  ie doing chores, dressing, making a sandwich, dialing a phone.

Has zero income, no medical insurance.

The first half of the year she has lived with us we sought out her diagnosis.  This was a drawn out process; mental health services, primary care provider, neurologist, etc..  she has been diagnosed with severe dementia.

She has ran away 3 separate times.  Once was after she was no longer allowed to drive.  She hates living with us.  (do note:  I did not say she hates us)

Since January, Chanelle & Fred have been trying to find financial resources for her in the hopes of letting her move out and into some form of assistant care.  This is not something we want or prefer, but rather what we feel we have to do for her.  We have found places, but they cost up near $3000 per month.  Financial assistance is not an options while she still has money in a savings account.  Ironic that we didn’t let her spend a drop of her money (cept on medical expenses cuz we just can’t afford that) for any expense, and now she needs to spend her money!  So we began to charge her a small monthly fee (rent) and had her begin to buy her own necessities (ensure, toiletries, etc).

In June it became apparent that Grandma M needed more assistance than I was capable (or comfortable) with.  *intentional lack of details here*  So we began to have a caregiver come to our home.  This has been such a blessing.  This lady is fabulous with Grandma M.  Not only helps with the personal things in a professional and respectful way, but because they are around the same age (yes, M is a very young 62 for this type of struggle) the caregiver finds fabulous things for them to go out to do!  Swimming, lunch, walks, concerts by the water, musicals, etc…


We have had Grandma M travel to California twice this summer to visit her daughter.    We do recognize that this is probably the last trip she can make as it is too hard on her to travel now.  We are also dealing with that she has an unhealthy obsession of her daughter.   She calls her numerous times a day, talks about her all day, asks about her all day…everyday.

on the flip side, I am the bad guy.   surprised?  yeah, me neither.  *sigh*   “I” make everything tough on her, “I” steal her make-up, etc…  Amazingly, she can get more angry at me for talking to the caregiver about her needing to change her clothes, than at her son for having to go through her personal belongings to find soiled clothing.

We are still trying to seek out financial assistance in.any.way.we.can.  She is old enough for social security now, which is a catch 22.  It is not enough to help her find a place, but adds to her *income* bracket for not qualifying for assistance.  :^o   Chanelle, bless her heart, is working diligently to seek disability for her.  We do not know when that will kick in or if it will provide enough of a monthly income that is necessary for the proper care we seek for Grandma M.  It is all unknown and scary for us, and quite frankly hard to live with someone so miserable to be around the people that are loving on her the most, yet not being able to do anything about it for her!

Grace & Mercy

confession:  I prayed desperately before M moved in with us that I could just simply have compassion for her.  That after years of knowing I am not her favorite person, that I could just simply care (about her) regardless of  her response toward me.  Can I just admit how oh.so.hard it has been?  Oh, don’t get me wrong, God has given me a grace to love on M.  To serve.  To care.  To guide.  To be patient.  To understand.  To see past the fears, anger, & oddities.  It is the rejection that I struggle with.  I know the why behind it all, but I just do not have tough skin for ugliness.  I just don’t sit well with people not liking me for the sake of just not liking me.  But I reflect upon Christ’s Mercy for us, that while He was rejected, He still died on the cross for me (and for you), and I am humbled.

Hope & Love

Hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.  Romans 5:5

Please pray alongside us that all things will fall into place according to God’s will for us all~

7 thoughts on “Walking alongside Dementia

  1. My dad died of Alzheimers so I feel your pain. I had my mom and my dad living with me for five years but then it became too much for my mom and my dad lived his last year at the Veteran’s nursing home. I literally would kneel by his bed and pray that he would die before I had to put him in a home. It didn’t happen. Hang in there. Maybe you should have another baby and see if she notices:)

    1. ba-ha, I just about spit my SoBe out reading your reply. =) I gave up hopes for another baby when I turned 45 last year *wink*
      Yes, the long term prognosis is a bit scary with m.i.l. being so young yet; hope your mom is doing well after all that.

  2. In the better late than never category, the northern branch of the family thinks you’re wonderful, too. I know how hard it is on everyone. And I know it’s not the same as hearing it from you MIL would’ve been, but my mom has said, more than once, even, that she thinks you’re the best thing that ever happened to Fred. Bear in mind, she’s always had a soft spot in her heart for active little boys, so she’s always liked Fred. She thinks he would’ve been just fine, regardless. But that you two are a truly amazing adult team.
    Also, she feels your pain. She didn’t have a child, but she’s 6 years older than my dad, and in the olden days? Big deal. My grandparents were horrified that she was in her 30s and she spent 30+ years never being fully accepted. My grandfather made her call him Dr. his whole life. But the week he died, he took her aside and made her promise to take care of his little cat, so she figures she earned a little bit of respect, at least. I’m sorry with Grandma M’s dementia that you’ll probably never consciously get that. But your northern family respects you from head to toe.

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