Have you noticed a change in yourself since being a caregiver?

Good Afternoon,

I think we can all identify with what you wrote. Oftentimes in these caregiving roles something happens overnight or an emergency and you are thrust into the role, you just do it. These situations can go on for years.

"A girl has gotta get out". I know this sounds corny and a cliche but you have to save a piece of pie for yourself along with keep an eye on your finances. I have said many times on this forum, I do not want to be living on popcorn in my old age.

Sounds like you are spreading yourself too thin. The near car-accident you described is a warning but can also be a Blessing! You may have to sit down and make some changes. Your father may disagree with you but when this is all over, you want to be left standing--in one piece.

The list of "things to do" may be getter longer for you and you may have to outsource some--cleaning service, groceries delivered, whatever you can streamline to save time but more importantly your energy and health.

You need a group--swim group, walking club, Church, an instrument, language, you get it. A few hobbies but not online. Join your local gym or Y, a class perhaps and see how life can change.

Do you have good pillows for sleeping, a pleasant comforter and a good reading chair. Flowers on the table from the supermarket and of course a dark chocolate candy bar.

Find yourself a good "colorist" it's like a marriage and stick with them. A good cut and color now and then will give you your groove back.

I, too, for the longest time would say, I would never put my mother in a home. But, with Lewy Body Dementia there may come a time. We have tried home care--the people were wonderful. Occupational therapy, physical therapy, palliative care, a short term rehab, one morning a week day respite...

An Up Walker Lite, special shoes, piano keyboard, etc. Everything is modified in the bathroom, etc. A button in case of emergency, you name it.

You have the right idea and you don't need anyone else's permission to take care of yourself! Amen Sister...

You know what really helped me was going to community acupuncture and having someone to talk to then going and getting a late lunch / I felt human . I also found $50 massages to relieve the stress . My social worker got in a CNA to bathe him and do laundry 🧺 it really gave me a break . However I did most of the grocery shopping and cooking but I made sure we went out to eat once in awhile . Meals on Wheels helped a lot . He was content in his schedule but I did feel on call 24/7 . Find a person who could be a companion even for a walk . Find a grocery shopper . I just started recently noticing handsome men again . It’s the Little things in life like buying ourselves flowers 🌸 or gardening that gives us pleasure - the acupuncture let me meditate and have calming thoughts . I felt less depressed and exhausted.

I probably was in denial how much I changed while being a caregiver for my wife. But after she died I really noticed how much time I was devoting too her and what I gave up. Of course dealing with death is hard and will change your outlook on the future. I look forward to returning to my former self.

I feel pretty much the same way but I have been a Caregiver for my Mom and she has undiagnosed dementia but I know the traits. It wasn’t as bad a few years ago compared to now. Although she’s been good about not calling me negative stuff like being a bum, freeloader, and being useless. I should have known it’s not really her saying that and it’s the mental condition. She couldn’t be left home alone with her condition and I have lived with her for over 16 years. We’ve been in a 2 bedroom 2 bathroom apartment on the top floor of this apartment building. I thought of escaping bug I couldn’t. I have my bedroom of belongings and electronics. Furniture. No other place to go so I had to stick it out and read my prayers from my Bible app. I had been seeking help but it was out of my Mom’s pocket. She has United Healthcare Medicare Plan A& B. She’s 91 and I not my older Sister didn’t want her in Assisted Living or a Nursing Home. I took it the best I could but admit to losing my cool and yelling back at her a few times. It’s Caregiver Stress related as far as I’m concerned. To me it’s a 2 person job. How it effected me is making me more introverted and I didn’t have much positive things to say. I seem to believe who you live with rubs off on you. Until there’s some relief. That’s finally coming soon thanks to a Caseworker through my Therapist.

I completely see all of your points. I am the sole caregiver for my elderly mother with dementia. I also work full time from home. The fatigue of one job that is 24 hours a day and my actual paid position is compounded by the emotional stress. It leaves little time for stress relief, fun or even self care necessities sometimes. I think it is important to note that it is more than okay to change course, reversing decisions as things change. My threshold for every area of my life and existence was changed by this decision to caregive on this basis, for this person. We all need to forgive ourselves for guilt, doubt, what we view as shortcomings. Life is still for living. A half life is sad for the ill and no one deserves it. I send you all hugs and love and support regardless of your situation, mistakes,or emotions.❤

I'm sure that I've changed since being a caregiver. I'm just not quite sure how and to what extent.

Taking care of my mother is way easier than what and how my husband expected me to take care of him. He was a physically, normal individual, and a middle manager for a large corporation. After the divorce, I definitely had a better idea of my emotional limitations and realized how much I did to "serve" him.

Thankfully, I have my sister and sister-in-law that can provide me emotional assistance when I need it. In addition, with the emotional growth that I have done with the divorce, I now can choose what I do, rather than let others choose for me. I try to stay out of the guilt trap, which both my Mom and my ex used extensively in the past.

So I'm sure I've changed....and yes, I'm probably burnt out too.

Caregiving makes me feel like I’m married to my mother. I want to get divorced.

I want to find my soulmate. I’ve never been married. I want to get married.

Oh my goodness! I could write a book about how care-giving has changed me. I didn’t really notice (wouldn’t allow myself to, I think) just how much I have changed. It wasn’t until our sons came to help out with a surgery their father was having that my eyes were suddenly opened about it! The shock on our younger son’s face when he walked in the house and went to hug me shocked me. A few days later, our sons almost literally, put me on a plane to their houses, and I then ended up in hospital for an untreated kidney infection…then I had to see the changes.

My heart goes out to all of us that care and give and care some more. I have slowly began to get bits oh myself back. It was so much loss: loss of my beloved home, friends, sleep, and hopefulness. One of my doctors told me that I “am becoming a widow in slow motion” and a huge light went off in my head and heart. I lost my sense of humour and fun, joy in life and health and what was left of my looks. Huge handfuls of my still dark hair were falling out and my hands were shaking a lot. How did I miss that? (Not to be shallow, but also lost so much money and financial security from becoming a full-time at-home care-giver.)

My therapist gave me literature on how spouses of men with last-stage COPD and heart failure often die years before them…the “sick” ones.

As I was diagnosed with severe Caregiver’s Post Traumatic Stress Disorder, I finally saw how much my life and I had changed.

Now begins the tiny baby-steps to regain some of what I lost. We hired care-takers to care for him and he didn’t die! He hasn’t been too happy that I became so physically sick and spent so much time in hospital and had two surgeries…all because I had no time to even sleep or see a doctor after getting him to all his many many appointments. His cardiologist often told me I was the only person that could keep him alive and I believed that to the point of almost dying myself.

Rambling a bit too much here and hindsight’s always so glaringly obvious.

I lost myself. Trying to piece myself back together has been painful and I struggle with guilt a lot but almost dying opened my eyes.

Hugs and support to every single one of us that undertakes this role of caregiver!

faithfulbeauty: Caregiving is hard. Caregiving out of state is even harder. I did it when I had to move in with my mother to care for her seven states away from my own. I had to figure out brief periods of respite for myself, else I would have gone crazy.

Dear, you say both things @ the same time - "but I have learned to put my needs first." and "I do everything for my dad....he has me to do everything for him and I have no one to help me."

You say you've mentioned home health to help & he doesn't want it - well you do! It is NOT all HIS way dear!! We are here to support you and WE KNOW that if YOU WANT and NEED HELP - then we say - GET THE HELP! It'll be a bit of a fight but worth it for YOURSELF and YOUR SANITY. I am not yelling sitting here @ my desk typing, but I am yelling to emphasize that you are very precious and dear to God for the love you give and you must care for yourself too. It is not a betrayal or sin to get some help. I pray you will.

Oh, and caregiving did change me too. I was depressed and angry for 'losing my life' for a while (few years) - I was a caregiver/manager for 7 years. I even moved in with them (elderly couple, both had dementia and more ailments). How did it change me? After I got past the anger and resentment...I actually started to open up. I started to relax a bit and "be" with others - the 4-5 other caregivers. I was very closed and guarded - I had to relax to manage because I was terribly bossy and acted like I didn't care about the other people (but I did) and I had to change to survive in my position. I learned to forgive on a daily, hour to hour basis. No more anger & unforgiveness for days/weeks @ a time. I couldn't afford that and be a good caregiver. Caregiving requires you to love and forgive again and again and again and again (you know what I'm saying - 20x a day for years). I also learned that I didn't have to be angry all the time. I used slathered everything with anger. I learned through the Mr. & Mrs., and their family, that even though their personality were worlds apart and some definitely didn't see eye-to-eye, they didn't "yell" at each other; they didn't curse and say horrible awful things, the way I had learned growing up. This family taught me good behavior through the differences. I'm grateful. I don't know if I could say these things if it were my own family I was talking about cuz that's another story. I'm grateful God gave me that opportunity and it was good. Hardest job I ever had though. I think caregivers are angels on earth, though I don't know about me. I'm still ornery, but I'll never be the same. ❤

To all caregivers
you can’t expect your loved one with dementia to sympathize .. appreciate
and help with all you do for them.
Their brain is broken … they’re not same person anymore . You’ve got to make all the decisions for both of you. You’ve got to make sure you’re
Both safe and well cared for and decide on how to do that best !!!
hugs to all !!

Yes, I totally relate. I stuck my hand into a running garbage disposal (my moms, that she wanted me to clean) because I was so preoccupied with the gravity of and anger about my current situation as mom’s caregiver. I just joined this forum today to vent about my situation. But I have been reading and have deep compassion for you all.

I miss the girl I was so long ago. To be carefree and brave. To have the hopeful outlook that anything and everything was possible. Now I feel lost, isolated and exhausted...all the time, exhausted. And it's a sad commentary that someone has to die before we can find a way to nourish our souls bit by bit so we hopefully can become whole again. Most of us are in this waist deep and have to continually remind ourselves to breathe, never mind the astronomical task of self healing. All I want to do is sleep.

OMG! Where to start? I am caregiver to my 12 years senior (86 yr. Old) husband. Before I continue, let me say that I believe the stakes are much higher and harder to bear when you are caring for a parent...or sibling.

I don't consider myself a natural nurturer- just ask my 55 year old daughter that I raised as a single parent. When DH and I married 38 years ago, he was pretty self-sufficient, suiting my lack of nurturing skills. Six years ago he was diagnosed with the first of his life threatening maladies. They have since grown to a total of 6 separate -but overlapping illnesses. At first, I niaevly took the romanticism view..."in sickness and in health..till. death do us part.." That quickly turned to anger...resentment...and near-constant "poor little me". After about 4 years of that, I contacted a therapist that I had seen for several years, over 40 years ago. She now lives out of my state, but took my call without reservation and has been my steady, caring voice of reason since.

With the help of my husband's care team of neurologist, pcp, pulmonologist, cardiologist and neuromuscular neurologist, I was provided with resources to help support me as I care for him. They helped educate me and point me to other resources. I began to read every peer-reviewd medical journal article and foundation information update I could find. (You need at least two devices...one to search and read, the other to look up every other word. A printer helps. I can highlight things I question or don't understand to ask his care providers.) This has served to help me cope...but also has had a downside. I am obsessed with knowing what it all means. Does the increase in nightly cheyney stokes apneas mean he is closer to dying? Does it account for worsening dementia from lack of continuous oxygen? His gaite freeze is more frequent. Will he wake up unable to walk? The dyspnea (trouble getting enough air to move around) is horrible today. Should I call 911? He is so weak he can barely make it to the bathroom in time. All these things are happening in one day...will this be the day he closes his eyes and dies? He is so needy the past few days, I can barely keep up. He wants me close at all times. Will I be able to hang on two more days until a home care person comes and gives me 3 hours of freedom?

My anger and resentment have -oh so slowly- turned to acceptance. At least for now. This is my new normal. When he tests my patience, I mutter a prayer, "please God, let me learn to love him more". And the end of the day. I thank God for giving me the strength, love, and patience to care for my husband another day. Then add,"please God...keep me strong and healthy...and save a little of 'me' so that when he dies, I have opportunities to build a new life where I can thrive".

But...I am not a forced caregiver. I do not have the extra burden of someone in the house who just assumes I will handle everything. But I have learned to advocate for myself better. I no longer let my husband and 'head of the house' steam-roll' over me. Most often things I must give in to are truly not 'that big of a deal' and I go along to get along. But when necessary, I have learned to say no. Like when he did not want in Home care givers. I finally said, fine. I hired them anyway and told him they were for me. When they arrived, I simply showed them where everything was..and left, saying I'd be back in 3 hours.

Yes, I have changed greatly.

I'm providing a response to my own question. We also must be careful not to give in. Although I have just started a new job that I love, I'm already thinking maybe I should not have taken it because I'm exhausted from things that occurred with my dad from Thursday until today. So what I'm saying is that once you find a pleasant outlet whether it be a job, a hobby or etc. DO NOT abandon it! As a caregiver you need an outlet.

https://www.apa.org/topics/stress/body - partial article here:

American Psychological Association - way too much to copy here. Go to the link. This isn't to scare you... hopefully, you will realize you can only support another equal to caring for yourself FIRST.

Stress effects on the body

Stress affects all systems of the body including the musculoskeletal, respiratory, cardiovascular, endocrine, gastrointestinal, nervous, and reproductive systems.

Our bodies are well equipped to handle stress in small doses, but when that stress becomes long-term or chronic, it can have serious effects on your body.

Musculoskeletal system-When the body is stressed, muscles tense up. Muscle tension is almost a reflex reaction to stress—the body’s way of guarding against injury and pain. ... With sudden onset stress, the muscles tense up all at once, and then release their tension when the stress passes. Chronic stress causes the muscles in the body to be in a more or less constant state of guardedness. When muscles are taut and tense for long periods of time, this may trigger other reactions of the body and even promote stress-related disorders.

Respiratory system: The respiratory system supplies oxygen to cells and removes carbon dioxide waste from the body. Air comes in through the nose and goes through the larynx in the throat, down through the trachea, and into the lungs through the bronchi. The bronchioles then transfer oxygen to red blood cells for circulation.

Cardiovascular system: The heart and blood vessels comprise the two elements of the cardiovascular system that work together in providing nourishment and oxygen to the organs of the body. The activity of these two elements is also coordinated in the body’s response to stress. 

Acute stress—stress that is momentary or short-term such as meeting deadlines, being stuck in traffic or suddenly slamming on the brakes to avoid an accident—causes an increase in heart rate and stronger contractions of the heart muscle, with the stress hormones—adrenaline, noradrenaline, and cortisol—acting as messengers for these effects.

Chronic stress, or a constant stress experienced over a prolonged period of time, can contribute to long-term problems for heart and blood vessels. The consistent and ongoing increase in heart rate, and the elevated levels of stress hormones and of blood pressure, can take a toll on the body. This long-term ongoing stress can increase the risk for hypertension, heart attack, or stroke.

Repeated acute stress and persistent chronic stress may also contribute to inflammation in the circulatory system, particularly in the coronary arteries, and this is one pathway that is thought to tie stress to heart attack. How a person responds to stress can affect cholesterol levels.  The risk for heart disease associated with stress appears to differ for women, depending on whether the woman is premenopausal or postmenopausal. Levels of estrogen in premenopausal women appears to help blood vessels respond better during stress, thereby helping their bodies to better handle stress and protecting them against heart disease. Postmenopausal women lose this level of protection due to loss of estrogen, therefore putting them at greater risk for the effects of stress on heart disease.

Also see:

Endocrine system 
The HPA axis 
Stress and health 
Gastrointestinal system 
Esophagus 
Stomach 
Bowel 
Nervous system 

STRESS MANAGEMENT ____________________
Maintaining a healthy social support network
Engaging in regular physical exercise
Getting an adequate amount of sleep each night

These approaches have important benefits for physical and mental health, and form critical building blocks for a healthy lifestyle. APA gratefully acknowledges the assistance of William Shaw, PhD; Susan Labott-Smith, PhD, ABPP; Matthew M. Burg, PhD; Camelia Hostinar, PhD; Nicholas Alen, BA; Miranda A.L. van Tilburg, PhD; Gary G. Berntson, PhD; Steven M. Tovian, PhD, ABPP+more.

Gena / Touch Matters

So glad you wrote this. We all need to hear it over and over again.

* It is or feels like a quantary to be exhausted caring for another and then needing to also care for our self ... exercise, eat right, making 'fun' or 'me' time. When I'm beyond pooped, I ALSO need to exercise. Really? I can't or shouldn't eat that extra xxx (dessert staring at me) ?

* Often finances play a huge part in how to manage loved one's care and hiring an/other/s to give us a respite. or as I did (too) researching and managing volunteers.

* Guilt feelings / life long family relationships weigh heavy on our current needs / involvement of caring (when we have decades of feeling power-less, angry, etc.).

* Needing to learn - without any prior awareness, ability, or knowledge that its even possible to set boundaries / limits. This digs deep into feelings of self-worth, self-care, self-love --- feelings I've spent 40 years developing. ... Some people need to learn it in present time - not easy.

Personally, I am so SO aware of all this, and I was exhausted for two years. Much of what I needed to do was be present in the moment and do what I needed (eat healthy, take a walk / jog, and go to bed). You know... all the healthy behaviors I USED TO DO RELIGIOUSLY until these responsibilities presented themselves.

The 'good' news is that we CAN and DO learn from our behavior and thoughts (and those sharing here). We can re-direct our thoughts and realize that we can do so much and then, as some might say "let go and let God."

Give yourself a hug and tell yourself "I am doing the best I can" (or I did the best I could ... as I am saying now).

Gena / Touch Matters

I have become a lot more contemplative about life and mortality, at a younger age than I would have liked.

I feel, it has made more more empathetic to the struggle of others.
I remember feeling annoyed by elderly patients, their adult children, and some of the less than glamorous doctor-patient interactions in this situation.

But, I think living through my mother's situation has given me new perspective.

Even the difficult/unpleasant question of "why doesn't the family member of xyz terminally ill person visit more often" has taken on a new perspective.
I used to think, they were being selfish and didn't care about their sick parents... but now I realize that it's just burnout.

There is only so-much 24/7 caregiving you can do for your parent... and for those adult children, sometimes the hospital admission of their parent is the only chance they get for a full night's sleep.

Thanks for your input. I value the words of this experienced group. You all inspire me to be better.

If it's Dementia your dad is suffering with- I'm with you on almost everything you've written, I'm also a sole care giver for my 88 year old wife, have been for almost three years now. Even though I do agree with you on the subject of putting your needs first - I find that very difficult to do, even though I do understand the purpose.

The one comment you've made, that I want to address has to do with the close call accident; you wrote: "At the time, I was in deep thought about something he had said to me that he should not have. I'm often preoccupied with his negative words."
I'm sure you do understand, I have to keep reminding myself, that it was NOT my wife (your dad) saying the objectionable words - it is this ugly disease. My wife has said some of the most objectionable things possible - to me, our adult children, other relatives, even healrh care workers. Since joining this forum a few months ago, I've learned form the comments of others, that verbal aggression is probably one of the most common traits of this disease.. Please do not allow it to get to you - your dad is not verbally attacking, Dementia is - however, if it's not Dementia - disregard my rantings.