Staying Sane When Caring for a Loved One who has Dementia

by AbbyFitz

A loved one's struggle with dementia can be heartbreaking and stressful. Here are a few things I've learned that's helped me cope with caring for my mother.

After several years of weird but progressing symptoms, my mother was diagnosed in the summer of 2013 with dementia.

In the beginning, I found it quite frustrating, even maddening at times trying to care for her. It’s hard to live with someone who forgets what you tell them and what they've told you. Even basic everyday tasks can become a source of contention when you're caring for someone with dementia.

Through trial and error (and a whole lot of prayer), I’ve learned how to better cope with the stresses that come with my mother’s dementia.

If you've never been in a situation like this, it can be hard to know what to do and expect. I want to share what I’ve observed and learned in an effort to help others who may be dealing with similar situations.

Realize it's Not all About What You're Going Through

The classic line, "put yourself in their shoes," takes on a whole new meaning when you're a caregiver.

Footprints in sandSometimes when we feel life gets tough, our focus tends to shift onto ourselves and "how bad this is on me." When dealing with a parent or grandparent who has dementia, or any progressive disease for that matter, I think it's important to understand what your loved one is going through. Changing your thought pattern from "me" to "you" is key in dealing with caregiving.

We've all walked into a room and forgotten what we went in there for. It's annoying to say the least. I think that is what dementia patients go through, but on a much larger scale. How scary would it be to forget basic everyday knowledge, and your family members become short tempered with you because of it?

How frustrating and how frightening it must be to have everyone in your life insist you said this or did this but have no memory of it!

When my mother was first diagnosed, all I could see was how hard it was going to be on me to care for her as her disease progressed. Since then, however, I have tried hard to put myself in her situation.  What I've discovered is, if it’s difficult for me to deal with her illness, it is only a fraction of how horrible it must be to actually live it.

I think coming to this conclusion has helped me empathize with my mother and kept both mine and my mother's frustration level down to a minimum.

Pick and Choose your Battles Wisely

Focus on what's important, not little things that don't amount to anything.

Sometimes, even though we may know that our loved ones don't mean to be difficult, tempers can get short. Little tasks, such as washing the dishes or even paying bills can result in a full-blown argument.

At times like these, it's important to learn what's worth fighting over and what's worth letting go. Our parents and grandparents deserve nothing but the highest respect, so we should only argue over the issues that really matter.

Things like not turning off lights, misplacing mail, or leaving food out in the kitchen used to drive me bonkers, and I'd argue with my mother about it. However, I've learned to just accept these little aggravations as it's just life. It's not really important in the grand scheme of things.

Don't get into a power struggle with your loved one.
Tug of War in Olympic Park, Calgary, Canada

However, one of the things my mother has absolutely refused to give up control of is her finances. Up until recently, she didn’t think she had a problem, and it was something she could handle on her own.

When my mother was first diagnosed, she spent a month and a half in a hospital and rehabilitation center. During that time, I handled all of her finances and discovered they were in a mess. She had many bills she hadn't paid, and there were other bills she had double paid.

It took a month or so, but I finally got everything taken care of. After she was released, she wanted to go back to paying her own bills. I showed her where she had run into trouble before, but she argued with me. It was easier to just let her do it and not fight about it.

By arguing with her about trivial matters and not about the important things, such as her finances, I really caused my mother financial problems. I've learned to only put my foot down on things that can have consequences and let everything else slide.

Don't Sweat the Small Stuff

We all have our little quirks, and dementia patients have them in spades.

People with dementia are going to do some really weird things. Whether it’s putting things up where they don’t belong, accusing others of stealing their things, or asking the same question repeatedly, it’s important to just relax and not take it personally.

So what if things are out of place? When it comes down to it, a cup being put in the wrong cupboard isn't a big deal.

If and when your loved one accuses you of stealing money or their personal items, remember that they're dealing with only their version of reality. Getting angry at them gets you nowhere, and it can make them feel like a burden when they finally realize what really happened.

Dirty DishesMy mother likes to do the dishes. However, I started noticing clean dishes left all over the counters. I’m not a neat freak, but I hate clutter and I like everything it its proper place. Finally, I couldn’t take it anymore and I asked why everything was out. She told me it was because she couldn’t remember where anything belonged. That answer broke my heart. I’ve never said anything about it since, and I just know it’s a situation I have to deal with.

A few months ago, she accused me of taking her money she had had in her room. I told her I hadn’t seen it. She wouldn’t let it go, demanding that somebody had taken it. When I told her that she had probably forgotten where she put it, she became angry. I calmly went looking for it in her room and finally found it. She’s done this several times since, and I just ignore her and look for what she claims was taken.

It was hard at first, but her weird behavior has become the accepted norm in my life. By realizing that things like this are going to happen, I've found it's greatly reduced my stress levels.

Friends and Family are Your Support System

Sometimes stress builds and it needs to be released, and the best way is to vent to a friend.

They say no man is an island. No matter what is happening in your life, it's impossible to deal with a situation effectively on your own.

When you have someone you can talk to about what you're feeling, dealing with whatever you're faced with becomes so much easier.

I've always been a very private person. I never confided much to even those I considered my closest friends. This journey with my mother has changed all that.

I've learned that I can't effectively care for my mother, my son, or myself if I don't have a healthy outlet for my frustrations. My fiancé and another close friend have become my rock. I know that each time my mother does something strange or aggravating, I can pick up the phone and tell them what happened.

It doesn't change the situation I'm dealing with, but it does relieve my stress and it helps put things into perspective.

Appreciate the Moment

You never know how fast your loved one will decline. Enjoy and savor them while they are with you.

I think it's important to remember that our loved ones with dementia have a disease that is just as devastating as cancer. And just like cancer eats away at the body, dementia eats away at the mind.

As things have progressed, the person I once knew as my mother is slowly disappearing. She says and does things that she never would have done even a few months ago. It can feel at times like I'm living with a total stranger.

Sometimes, though, I can see glimpses of who she used to be, whether it’s something humorous she's said or done, or the way she looks at me.

I have come to appreciate these moments more and more because I never know when the woman I know as my mother will be completely gone.

Updated: 01/17/2017, AbbyFitz
 
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kimbesa on 08/26/2017

Thanks for putting together this article. Your voice of experience! Very helpful...

Veronica on 05/10/2017

Cheryl. angel,
I am lighting the candle for you as we speak. It's a terrible feeling but sometimes in order to look after a loved one properly we have to get them in the best possible care. I told myself this constantly when we had to put Dad in a care home.

We visited constantly though and we always bought him beautiful, new clothes ; we weren't going to have him in shabby clothes just because he had dementia. I also bought him a new outfit including a bow tie every Christmas so had new clothes on Christmas Day . I made sure he had his hair cut too.

It is important to keep their dignity in tact. But don't forget your dear self either. If you want to get on here and send your pain off to the ether then do. Keep talking and you will get through it. There is light at the end of the tunnel although the pain doesn't go away it lessens eventually.

AbbyFitz on 05/10/2017

Hi, Cheryl,
I'm so sorry to hear about your mom. I know it must have been really hard to put her into a home, and to see her moved to another level of care. I never had to put my mother in a home, but I came very close to not having a choice. I was considering where to put her when she passed away.

I truly hope your mom does okay, and if she were in her right mind, I'm sure she would say how much she loved you and not to worry about her. All you can do at this point is love her and make the best decisions for her to keep her as comfortable as possible and give the rest to God. Prayers to you and your family.

Cheryl on 05/10/2017

So many that can relate.. can ........My mother was moved to frail care today and I am devistated..all her small and was left of her as my mom and person was taken away today..when I looked into her eyes it felt like my heart was torn out..I dont understand why this had to happen to her..I know the day will come when she will no longer remember me but I made a choice tiday that I will treat her with the utmost love and hugs till all ends..we never had a great bond but i dont care..because she needs me now more than ever..she lives in a home. And they all live her..but today she was moved to share ..because other started getting irritated by her. I JUST WANT HER TO FEEL LOVED AND CARED FOR..THAT IS ALL I have to offer her and I want her to feel loved and not alone till the end..thank you that you shared i dont think people know the pain and heartache seeing your mom desolve day by day...its heartbreaking..but in God hands

AbbyFitz on 04/26/2017

I'm glad this post helped you. I think that things are easier to face and accept if you have some idea of what the future will be.

Bonnie McCluskey on 04/25/2017

Thank you for sharing your story. My mom is changing everyday and it is very hard losing her this way. It is comforting to know that my actions with her are normal for her condition.

Suzanne on 04/02/2017

Mum was diagnosed with Lewy Bodies Dementia a few years ago. At first she went down hill fast and then plateaud, now a slower decline. Having LBD means she has the mental decline of dementia and the physical decline of Parkinsons. I call her my partially toilet trained toddler, I try to give her as much independence as possible but I have taken over more and more stuff...assisting with bathing, dressing, I cook, clean, wash, shop, bank, pay bills, etc. I get very little help from the family but she goes to respite 3 days a week, have overnight respite when needed and longer respite a couple of times a year (allowed 63 nights a year)

AbbyFitz on 02/28/2017

I'm so sorry about your mom. It was very hard for me dealing with my mom and we had a good relationship. Sometimes I didn't think I was going to be able to take it. She died a year and a half ago, and I am so glad I was able to take care of her. I can't imagine how hard it is for you if you had a rocky relationship.

My best friend was like you, her and her mother had a very volatile relationship to say the least. (I witnessed it growing up) After her mother passed away she told me she was happy to be able to be there for her, and at the end she made peace with her mother. I hope you have good family/friends support. Sending you hugs and prayers.

Shirl on 02/27/2017

Thank you, Thank You , Thank You for this informative article, the whole family should read this. Taking care of my mother has been the most challenging , exhausting , frustrating, exasperating thing I've ever done...Sometimes I don't know If I'm going to make it...When I stop and pause and think how frightening it is for her...It does help... Unfortunately my mom was not a nurturing, loving ,sincere , strong kind of mom to us kids (5) all our lives, She was Judgmental, Closed minded, opinionated (her way or the highway) Cruel both phyiscally and emotionally, she was never satisfied ever and it seemed to fall on our shoulders when she was not, like we were responsible for her happiness...I believe her personality being that , this illness Alzheimer /Dementia has amplified what she was/is ...so with no love lost for her ... I search my memory for those fragmented moments of good memories I have of her as a mother to me...it helps ...I would be open to suggestions ...I'm sure I'm not the only person in this situation of caring for a mom who was like my mom...

Myra on 11/03/2016

Excellent read. Thank you for sharing.


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