Article

Staying Sane When Caring for a Loved One who has Dementia

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 sand Sometimes 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.

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.

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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 Dishes My 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.

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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.

Replete with the powerful words of experienced caregivers, Dementia Caregivers Share Their Stories is an essential guidebook for anyone who must attend to the needs of a loved o...

Online Support for Dementia Caregivers:

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 January 17, 2017

Comments

kimbesaAug 27, 2017

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

VeronicaMay 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.

AbbyFitzMay 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.

CherylMay 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

AbbyFitzApr 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 McCluskeyApr 26, 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.

SuzanneApr 2, 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)

AbbyFitzMar 1, 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.

ShirlFeb 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...

MyraNov 3, 2016

Excellent read. Thank you for sharing.

SharonAug 11, 2016

Thank you for this encouraging post! Please know how much it helps knowing that someone is going through the exact same thing as you are.

AbbyFitzJul 23, 2016

Meghan, I really feel for you. It's so hard when it gets to that stage. Even though she can't remember who you are, at least you know she recognizes you on some other level. It gives you something to hold on to through this difficult time. Thoughts and prayers :)

MeghanJul 23, 2016

This was spot on. I take care of my mother who has Parkinsons and dementia. She often forgets who I am yet remembers my husband and daughter no problem. She doesn't just forget who I am she forgets ever giving birth to me and raising me. As if the past 41 yrs never happened. My mom is my best friend. She is always the one I went to when I needed to talk to someone. Even if she just listened and gave no advice. The day I realized that was over was heart breaking. I've come to terms with it now but it is still difficult at times. As we speak she is in the hospital with an infection making her even more confused, hallucinate, and aggressive. Even through all that and the fact that she can't remember my name some days, when I'm there she is calm. The nurses are amazed at how she is so calm when I'm around. So deep down, under all that disease, she knows who I am & that gives me comfort.

AbbyFitzDec 9, 2015

I'm so glad you enjoyed my article. My thoughts go out to you and your situation. It's so hard when they start forgetting major things.

PatDec 9, 2015

Hi, I am n my 60's and hav been taking care of my X husband for over a yr now, Vascular dementia was 1st said but because of strokes he had. We hav not lived tog. For over 30 yrs. But stayed friends, this is Very Hard to see him not remember r daughter, grandsons,me r our son that committed suicide 7 yrs ago. I never feel like I'm doing enough r doing things right. This was a very good article thank you so much ! God bless n help us all !

Annie RobertsonNov 29, 2015

This has been very helpful and is so true..... My mum has vascular dementia and its so sad to watch that person change so much its a cruel and horrible thing to go through....

AbbyFitzNov 20, 2015

I'm glad that this helped you. It's so difficult to be a caregiver, others don't realize how demanding it can be. We need to remember it's about the person we're caring fore. But we also need to remember to take care of ourselves. Make sure to take a few moments for yourself if you can.

RuannNov 19, 2015

This is one of the best articles I have read. I have always seen how my mom complained about her mom repeating things and how irritating it was. I told myself then and I remind myself now, one day I will wish that she were around to repeat those things again. I watch her get worse and worse and it's so frustrating. It is frustrating to have her accuse me of so many things and not tell her I didn't do it tho. I do help figure out whatever the problem is. But I'm her helper and I just keep helping. Thank you for the part that it's not about me, but her. I will remember that.

JolandaNov 5, 2015

Hi Olivia. Today i got the news my dad's dementia is just going down hill...he is in a rehab center but has lost so much weight..is so sad to see a love one just drifting away...but i want to thank you for sharing your story and helping others. God bless you.

AbbyFitzOct 5, 2015

Hi Olivia,
It's such a great thing for you to become your mother's caregiver. It's a hard job, but in the end, you'll be glad you did. My mother recently passed away, and I'm so glad that being her caregiver was the last gift I could give to her. Dealing with someone who has dementia can really try your patience, but it's important to understand that it's really not your mom doing those weird things, and above all, take time for yourself every week.

frankbeswickSep 30, 2015

You are a great person, Oliver. But remember, as carer you are the their prime resource, so you must maintain your emotional health. Make sure, therefore, that you save some genuine leisure time for you to refresh yourself.

Olivia RamirezSep 30, 2015

This story has helped me ,understand and that what we are going through with my mom, she was resently diagnosed with dementia , and I've moved in with my parents to be their caregiver and so far it hasn't been easy. But im still learning

CruiseReadySep 26, 2015

An important read for anyone who cares for or knows someone with this disease or any other that presents with diminished capacity. (My husband's is from brain damage suffered during open heart surgery 17 years ago.) I think the most significant thing you bring out is how crucial it is to change your thought pattern from "me" to "you." Secondly, enjoy what you can with your loved one - truly treasure what you can. That will do a lot for BOTH of you.

AbbyFitzSep 25, 2015

This is very true. I wish you all the best as you fight this terrible disease.

sandpipersongSep 25, 2015

Please keep remembering how ALONE and TERRIFYING your mother's journey is FOR HER. PEOPLE in her circle of friends are dying off quickly and family members vanish when they hear someone has dementia or Alzheimer's. We lost a mother with this and another mother to brain cancer. One dragged out for years but the other killed our mother in 7 weeks! Now I have it and an auto immune disease...no-one understands or gets it! ALL WE NEED IS LOVE. SINGING is one way to help someone remember...personal care...help restore dignity! THINK OF THEM AND NOT YOURSELF...they don't deserve to be ridiculed or ignored. DO NOT MAKE JOKES OR LAUGH AT THEM!

VeronicaJul 17, 2015

Harley, You will be feeling very alone at times. You feel that people say they will be there for you but that doesn't help when you are alone and scared and people don't tend to pop in at just the times when you most need help.

But you are not alone. You will just need someone to sound off to at times, rant and rage, someone to just talk to who will listen without giving any words back. It is hard to be patient at times when your nerves are fraught and you are tired. Contact support agencies and tell them what you need. Church groups are great for this too.

It is important to keep your loved one active physically, a walk each day and also mentally, maybe a jigsaw puzzle or word puzzles. Foodwise plenty green veg and salads if possible .

You have very hard times ahead ; don't be afraid to ask for and accept any help at all. It is a sign of your strength to accept it and if you turn help down, people stop offering.

You may think that you aren't strong but you really are. Just get on wizzley and tell us here how you are getting on. God bless you and your dad. He really doesn't want to be ill like this.

frankbeswickJul 15, 2015

She is still the same soul as she always was; it is the social self that fades; the centre remains.

frankbeswickJul 15, 2015

This article is a testimony to the good that Wizzley can do. It was a powerful and humanly relevant account of a problem that many face. You are right that prayer matters. It is a way in which your consciousness is transformed and empowered. I think that situations like this enable you to grow as a person. It is only through carrying your cross that you rise above yourself and blossom spiritually.

AbbyFitzJul 15, 2015

I'm glad my words confirmed what you've been doing. My mother is going to the extreme end of dementia, and I am finding it very difficult to deal with. A lot of prayer surely helps, and talking to others who have been through the same situation has been invaluable to me. No one knows really what caregiving is like unless you've actually been one. Keep on keeping on, and remember to take care of yourself, too.

SusanJul 15, 2015

I stumbled apon your wonderful paper at just the right time. My Mom is the "early" stages. But after seeing her sister live with Alzheimer's Disease for the past 15 + years, I know the signs all too well. I love my Mom with all my heart. Some of the suggestions you mentioned I am glad to say I have been doing. My Mom is 81 and we share a home. I have Ehlers-Danlos Syndrome and other health issues. I pray that God give me patience on days these difficult days ahead. I will,do anything in my power to make my Mama's days full of life.
Thank you again

hollyApr 17, 2015

This is a very touching story. My grandmother has been diagnosed with this disease.. I sympathize with her and just agree with her and let her know that I'm on her side and always agree with her. I wish other people in my family would do the same

AbbyFitzMar 24, 2015

Thank you for reading. I'm glad you appreciated it.

Laura AbrahamsenMar 24, 2015

Thank you for writing this relatable and valuable article. You are not alone.

AbbyFitzMar 12, 2015

@Harley I'm sorry to hear about your situation. Watching a loved one go through dementia, whatever the cause, is a traumatic thing, especially if you're young and alone. You shouldn't deal with it on your own, though. Consider finding an Alzheimer's Assocaiation support group. https://www.alzconnected.org/discussion. It's run by the Alzheimer's Association, but your dad doesn't have to have Alzheimer's for you to be a part. It's dedicated to anyone who is dealing with any form of dementia. There are groups all over the country, so hopefully there is one close to you. If not, they also have forums where you can ask questions and talk to others who are in situations like yours.

Also, consider talking to your school counselor. They should be able to put you in contact with a support system of some sort. Also, if you go to church, consider asking your pastor for guidance. Dealing with a loved one who has dementia is tough, especially so since you're so young. I hope you find everything you need to see your dad and yourself through this difficult time.

frankbeswickMar 12, 2015

Harley, you need to seek support from as many sources as possible, such as state agencies, churches and charities. Don't suffer alone, and also remember that troubles always pass in the end. Good luck, I will remember you in my prayers.

HarleyMar 12, 2015

Hello! My names Harley and im 17. My dad has vascular dementia and is also blind, going death & can't walk. I don't have any family and im struggling at the moment. I would be nice to talk to you if I can please. I don't knod snyone who can Guide me.

AbbyFitzOct 28, 2014

I'm so sorry to hear about your mother. I know it can be very hard caring for someone with dementia, but I can only imagine what you're going through now. Getting caught up in the day-to-day struggles of caregiving can make you lose sight of appreciating the little things. But, as you say, when you've done all that you possibly could, it's a good feeling to be able to give their last few years on this earth comfort.

DianaOct 28, 2014

I've been caring for my mother for the last couple of years as her dementia progressed. Two weeks ago she fell and she was gone in just eleven days. As difficult as it was to care for her I truly miss her. Like you I treasure the memory of the "good" days we had once in a while. It is a difficult road, but there is peace at the end of the journey when you know you've done all you could.

AbbyFitzDec 18, 2013

Thank you!

ologsinquitoDec 18, 2013

This is pinned to My Wizzley Writing Board.

AbbyFitzDec 13, 2013

Thank you, but I know my situation is not unique. My friends have proved invaluable

MiraDec 13, 2013

Wow, Abby, this was so sad. But you make such great points, I think. I imagine it's so difficult for you, and yes, having two great friends in very difficult times, like the ones you're going through now, is so important.

AbbyFitzDec 13, 2013

Thank you! Sorry your mother had alzheimers. It's a horrible disease

AbbyFitzDec 13, 2013

Thank you! Sorry your mother had alzheimers. It's a horrible disease

AbbyFitzDec 13, 2013

Yes, it does. It's important to help you care for them properly

jptanabeDec 13, 2013

Thanks for sharing. You are doing a great job caring for your mother. My mother had Alzheimers and my sister cared for her. Your right not to sweat the small stuff but take care of the big things. And enjoy the good times!

WriterArtistDec 13, 2013

I can easily understand the stress and confusion that comes from caring for a person who is ill. I have understood this only when I became ill myself. You get to know the difficulties a patient has to undergo, love and compassion helps in such case.

AbbyFitzDec 13, 2013

Thank you. Sometimes I don't feel like I am, especially when things get rough. I try to be though.

ologsinquitoDec 13, 2013

This is a sad but touching story. You've been a good daughter. God will reward you for this.

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.

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!

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.

Don't Sweat the Small Stuff

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

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.

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.

Comments

kimbesaAug 27, 2017

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

VeronicaMay 10, 2017

AbbyFitzMay 10, 2017

CherylMay 10, 2017

AbbyFitzApr 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 McCluskeyApr 26, 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.

SuzanneApr 2, 2017

AbbyFitzMar 1, 2017

ShirlFeb 27, 2017

MyraNov 3, 2016

Excellent read. Thank you for sharing.

SharonAug 11, 2016

Thank you for this encouraging post! Please know how much it helps knowing that someone is going through the exact same thing as you are.

AbbyFitzJul 23, 2016

MeghanJul 23, 2016

AbbyFitzDec 9, 2015

I'm so glad you enjoyed my article. My thoughts go out to you and your situation. It's so hard when they start forgetting major things.

PatDec 9, 2015

Annie RobertsonNov 29, 2015

This has been very helpful and is so true..... My mum has vascular dementia and its so sad to watch that person change so much its a cruel and horrible thing to go through....

AbbyFitzNov 20, 2015

RuannNov 19, 2015

JolandaNov 5, 2015

AbbyFitzOct 5, 2015

frankbeswickSep 30, 2015

Olivia RamirezSep 30, 2015

CruiseReadySep 26, 2015

AbbyFitzSep 25, 2015

This is very true. I wish you all the best as you fight this terrible disease.

sandpipersongSep 25, 2015

VeronicaJul 17, 2015

frankbeswickJul 15, 2015