Personality changes in caregivers

Mitsu2 · January 22

I read a very interesting comment in a Facebook caregiver group about how taking care of a person with dementia causes changes in the caregiver. Basically, the constant hypervigilance and responding to unpredictable and alarming behaviors over time produces emotional flattening and fatigue because our nervous systems aren't designed to be in a constant state of arousal. It probably has a connection with release of adrenaline and cortisol in the stress response.

Also, when a person has to focus on just getting by from day to day, and has nothing to look forward to, and is socially isolated, all of it takes a toll. The person posting this said it can takes a long period of recovery after caregiving to regain a normal level of emotional and social functioning. Anyway, it was a different perspective, and interesting for me to consider as a retired psychotherapist and sole caregiver for my husband.

Maru · January 22

https://alzconnected.org/discussion/75161/personality-changes-in-caregivers

Normally, I am (was) a joyful person. I bounced back from negative events quickly and anticipated well-meaning and good intentions from others. Even though my DH is only in stage 3-4, I have already experienced depression. I am not experiencing any more social isolation than previously except within our marriage. How can one carry on an intelligent conversation with someone who confabulates half of what they are saying? And, then, there is trying to treat someone as a functional adult with the dignity they deserve when out of the blue they are a rebellious teenager or a needy 5 year old ? We've only had a few days where I feel like I'm living Whack a Mole. I try not to think about how things will be as he deteriorates more. God bless all caretakers.

harshedbuzz · January 22

https://www.npr.org/2025/04/01/nx-s1-5336314/caregiver-caregiving-identity-family-support-burnout

H1235 · January 22

Last summer we had a very rare family trip with my grandkids to an amusement park. I have ridden roller coasters in many years ago but had alway experienced a bit of fear, thrill and excitement, trepidation. I road the biggest baddest coaster in the park and felt nothing, I was numb. I think my life was scarier than the coaster.

Bailey's Mom · January 22

I used to be an upbeat, funny person…now after 2 yrs of 24/7 caregiving for my husband, I am a depressing, toxic person to be around. I find it hard to have a conversation with anyone as I am always measuring what I say as to not start a tantrum. If I come out of this alive, I don't think there will be anything left of me.

Chance Rider · January 22

Depression and anxiety have taken a firm hold on me, and I’ve changed from an on-the-go active person to an unhappy sloth.

Yesterday my next door neighbors were walking on our road. I stopped to talk with them and realized I dominated the conversation talking about my husband. I apologized, they understood and offered to help with my projects. I don’t like that this disease is consuming me. I don’t want to be “that person”.

Stan2 · January 22

https://alzconnected.org/discussion/75161/personality-changes-in-caregivers

I am interested in your insights as a retired psychotherapist.

I have come to the conclusion that nobody, who has not been in this situation can fully understand the level commitment and personal immersion that is required for this role. I have become tired of well meaning professionals offering useless advice.

Do you as a caregiver have any different opinions than you had as a therapist?

Biggles · January 22

@Stan2 That is a very interesting question. A different perspective from the book of knowledge to in practice.

My DH and I were both fun, into life, social people, We now live a life of silent chastity, aphasia and VD have robed us, cheated us, taken everything. I can't believe how hard I work to try to keep our life interesting and alive and I think it is now taking its toll, every bit of my body is aching physically and mentally. Even the few and far social outings we manage are so very stressful and no one can help. My one saving grace is our daughter rings every morning on her way to work and pushes my buttons intellectually keeping me involved with current affairs (she is a Government researcher) it's so hard.

RetiredTeacher · January 22

It is absolutely hard....hard to watch our LO slowly slipping away, becoming different people than we married. Hard to have your world shrink, your outook bleak, missing the camaraderie of friends to being a hyper vigilent person, more concerned about DH's health, safety and happiness than my own. To witness myself slipping away from the extrovert who loved life and prized independence to what I have become is very depressing. I pray a lot and ask God to have his passing be peaceful and to give me the strength and endurance to survive this awful disease and allow me to enjoy some of the life I have left. I feel time marching on.

Quilting brings calm · January 22

I totally agree with the theory. Between everyone I’ve cared for since I was 22 ( 2 children 10 years apart, younger one ( deceased almost 3 years ago at age of 31) with seizures, both mom and step-dad ( both deceased in 2024) with dementia and other illnesses, my own health issues, my spouses health issues and now spouse slowly going blind…. I’m hyper vigilant, worry more than I should,but also numb. I find myself very resentful of every chore and request that I didn’t initiate ( and I mean things like having to call someone because our account’s not right, etc). I just want to stop anything that isn’t me oriented. And we know that is impossible. Not sure if I will ever snap out of it.

Mitsu2 · January 22

https://alzconnected.org/discussion/comment/264156#Comment_264156

I'm still in the midst of this so I'm just coping day by day right now. One of my first insights was how often dementia is misdiagnosed as anxiety and depression in the early stages. Most clinicians, including me, don't routinely assess cognitive functioning and memory in younger people (fifties and sixties). I'd know more about what to look for now.

Another perspective is something I learned with treating people who experienced trauma and abuse. The behaviors and emotional responses such as numbing emotions, fight or flight responses, keeping a distance from others so they don't get hurt again, were adaptive and useful as survival skills. But they didn't serve them well in their new life, and keep them from joy and close relationships. Maybe it will be a similar process in recovering from effects of caregiving. I'm also thinking that calming physical activity is crucial.

There is so little help and difficulty accessing services. I've had to explain that I can't use telehealth therapy, which I'd really like to do, because I have no privacy because of shadowing behaviors. It's hard for people to un\nderstand that I'm the sole caregiver right now and my husband can't be on his own for more than a few minutes.

Mitsu2 · January 22

https://alzconnected.org/discussion/comment/264169#Comment_264169

My son calls every day and we talk about my husband, but we also talk about positive family activities, world events, culture and local issues. It's really a lifeline!

persevere · January 22

What a great thread. I’m not sure what final changes my personality will undergo but as with all of us I have lived through emotions I never knew I had. Everything from near breakdown to realizing what true love is. One minute I’m seriously considering MC, the next minute I’m saying never. Something that has happened though is that this has helped me grow outside of myself. The full time caring of another person for so long and with such intensity at times causes you to sacrifice at levels you never thought possible. And on a spiritual level my DW was very devoted. Me not so much but I always find myself talking to someone in my head. And so I always wonder. Did we do something bad? Did we do something good? Is this our way of getting into heaven? Or will I go the other direction because of when I lose my temper or say something harsh. I dunno. But I do know that when it’s all over there will be people who will never be a part of my life again and others who I will hold dearly.

Biggles · January 22

https://alzconnected.org/discussion/comment/264170#Comment_264170

i do the same Ask for help guidance patience and kindness but the years are rolling on and I wonder if there will be much of me left at the end. I am so tired.

Belle · January 23

https://alzconnected.org/discussion/comment/264171#Comment_264171

Yes, 100%, this!!! I thought it was just me but after being a caregiver for multiple people, including DH for the last 12 years, I want it to be about me for once. Well, right now I want anything to be about me even for a little bit…My instinct is to want to help/volunteer and I did volunteer work for a long time but now I have zero interest in that except for making donations to organization I want to support.

Back to the original question. Yes, my personality has changed or maybe it's completely vanished as everyone else's needs have superseded my needs and wants. My hobbies no longer interest me. Even enjoyable things feel like a chore. Depressed? Probably, who wouldn't be after 12 years of caregiving?

tboard · January 23

https://alzconnected.org/discussion/75161/personality-changes-in-caregivers

I am a full time caregiver for my DH who suffers from mixed dementia. I was forced to retire a few months ago. I can not count on uninterrupted blocks of time but am able to work on various hobbies throughout the day. Last summer I spent a lot of time gardening. This winter I put my sewing machine on the dining room table and have been puttering away at various projects. I have also been knitting and crocheting and I manage to get library book fairly often. I make it a goal to do something or make something everyday. Yesterday I did some cooking and finished a sewing project I started last week. It is hard to concentrate on anything with constant interruptions so I limit my self to projects that are ongoing and that can be interrupted. I know that I will be a mess when this is all over but at least for now I can channel some of my creativity.

Maru · January 23

https://alzconnected.org/discussion/comment/264179#Comment_264179

I am responding as a person of faith and more than average knowledge of Christian theology…Bad things happen to good people all the time. Without going into Biblical teachings, it is sufficient to say that mankind is imperfect…physically, mentally and spiritually. Christians believe in a merciful and forgiving God and losing your temper will not send you to hell. All of life is a journey. We all do good things and bad things on that journey. As for me, I have decided to take this part of the journey as an act of reparation to my husband for all the times when I was a bitchy, hateful wife. I think of this as my proving ground…and, yes, I occasionally lose my temper or say something harsh. I ask for forgiveness and try harder. Lifting all caretakers up in prayer this morning.

BPS · January 24

I think this is a very interesting discussion. I know that this has changed me but I can't even start describe how. I too know bad things happen to good people because mankind has caused the world to be not perfect, but the hardest part for me is the unanswered questions about our relationship prior to this disease and knowing that she can never answer those questions. A few people ask how I am doing and I say fine because I am "doing" everything that needs to be done but if anyone ever asked how I am feeling and I thought they really wanted to know that would be a whole different conversation a much longer conversation then the casual Hi how are you doing. This is an interesting discussion but it also makes me sad to think about it.

Personality changes in caregivers

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