For those of you who are caregiving and living with the person you are caring for 24/7, how are you coping?

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Hi AC Forum,

I feel like I run the gamut of emotions on a weekly basis. I think that is a difficult side of this caregiving. Not being able to fully satisfy - or not being able to satisfy for what should be a normnal period of time. And on the same token know that each day you go down this path you just running to the finish line.

It's the craziest and horrible life as I am not able to live my life, yet I have a hard time thinking of my mom living with less. Also not being the face of which she says to at first seeing her and asking her how she is, "Better now that I see you!" Knowing that you are the comfort in their sight. Yet what it takes from one feels enormous - emotionally, monetarily, physically.

How are you doing?

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Wow, reading all your responses have just given me a much needed deep breath. I thought today I was reaching the end of my rope caring for my 95 y.o. mom. As a single gay man, with no children, I feel isolated and alone. My siblings are of no use, both alcoholic, drug addicts, and the one had been abusing my mother for years.
I agree with what some of you say in that there are special moments a few times a week where she says thank you, or "You do so much!" I actually had to quit one of my two jobs so I can care for her. I know everybody says you have to take care of yourself, but I find that difficult and as if it's yet another challenge to deal with. Thank you all for sharing your experiences. This site was a blessing for me, and I feel less alone. Let's all hang in there and breathe deeply. I'm Brian
I care for my 90yo Mom with dementia 24/7. How am I coping? I'm here. Like others in this situation including yourself I go through a range of emotions. I have a lot of anger and resentment of the situation, but not towards my Mom. I'm glad for her that I can do this. This situation has brought a tremendous amount of sadness into my life. There is not a day that goes by that I'm not aware of the life I have lost and it brings me great sorrow. I try to keep these feelings of sorrow to myself. But, sometimes the tears come and at least once a week it seems I have a good cry and that seems to help for a brief time.
I'm not sure there is a great way to cope with this situation that so many of us are in by choice or default. I would guess a lot of us are just hanging on doing the best we can and we'll continue to do so until the situation changes.
Not so well....i take care of my 97 year old dad....i feel tremendous anger..resentment...guilty im putting my husband and family through this...guilty if i have thoughts of putting him in a nursing home. Just tremendous amount of anger.
I would also like to say that having this website as a resource and knowing that you're not alone on this journey does make the situation more tolerable. Thanks to all the folks who take the time to answer the questions. You've made my life easier.
The way I handle that is by remembering that when shes gone then I can take time for me. but right now she depends on me to make her comfortable and make her feel safe and secure so I will. We have this thing she's very weak but we dance down the hall to te bathroom and bed every night and she loves it I wouldn't change it for anything
I know what you mean by up and down. Sometimes I feel on top of the world, then something happens and I'm angry enough to chew nails. I don't know how I would handle the frustration sometimes if it weren't for my helmet and my finger pistol. I shoot myself a lot with my finger pistol. It isn't loaded and for some reason helps to dissipate some of the frustration.

I have a huge range of emotions, going from peaceful and compassionate to indifferent to angry and resentful. Sometimes it is not linked to anything that my mother is doing. It can just be how I wake up feeling, so I can't blame anyone but me. It helps to step back and look at how I feel and adjust my attitude. Doing that helps me feel better and makes me more tolerable, I'm sure.

I do like when people tell me I need to take more time for me. I do take time for me every day, but the responsibility is still there. People can say to take a vacation, but you know it is not that simple. When the person you're caring for is competent and won't let anyone in or go somewhere for respite, there's only so much you can do. He/she is a person who is often headstrong and not an object we can move around at will. Wouldn't it be nice if we could just say, "Mom, you're going to Shady Manor for two weeks so I can take a vacation," and she would go. HA! My mother would say no. She would say she was fine on her own or she would want to go on vacation with me.

Wouldn't it be nice to really be the boss?
The last 3 years have been much better than the several previous ones. Therefore my absence from these forums. Of course, I nearly had a nervous breakdown and had thought about suicide before I realized that my MIL is not the ONLY person who deserves CARE and a LIFE.

I saw my doctor just before 'running away from home' for two weeks 3 years ago - with hubs permission - for some absolutely necessary R and R. The doctor's care and kind words and the support of my husband AND the two weeks I had alone at my sister's home (they both work) doing absolutely NOTHING for anyone else - and walking twice a day, swimming in her pool and just relaxing for the first time in YEARS - all of this saved my sanity and my life.

When I came home I did exactly what the doctor ordered. I CREATED BOUNDARIES - some physical and some emotional. Of course, my MIL thinks I AM CRAZY - because I pasted fabric over the windows in my french doors and tied the doors shut from MY side AND put a 40 lb bag of water softener salt in front of the door adjoining our living spaces - AND I didn't speak to her for 3 months - it took that long to forgive her.

I still cared for her meals, meds, etc. but my husband took them in to her. I just needed a very long break from her and her hatefulness.

Anyway, the doctor said I needed to set boundaries and we did. It seemed harsh at first - but he said NO ONE has the right to barge into another one's home making hateful, unfounded accusations. That I should treat her as a next door neighbor who needed assistance. That is what I did.

The time off from interaction with her saved me and allowed me to forgive her - I realize now that she MUST have a mental problem because NO ONE IN THEIR RIGHT MIND does the things she did and continues to do. She lives in denial of any hurt she has caused. And anything she THINKS is true - whether it is or not - whether it happened or not.

I know that not everyone's circumstances allow them this much freedom. My MIL is able to care for her personal needs - all I have to do is cook, clean, monitor meds and doctor appointments. Thankfully, her care does not require 'hands on' care the way it used to. She has 'Lifeline' in case of an emergency and meals on wheels for lunch. I leave breakfast and her meds on her kitchen counter before she wakes up and hubby takes supper to her in the evening. She has frozen food she can nuke if needed - in case we are not home. We no longer stay home every minute 'just in case she needs us.' Thankfully, her health is not that bad right now. .

We have already decided that if/when she is ever hospitalized again for the required amount of time for Medicare - she will not come back home - she will go ot a N.H. She also has 2 years of N.H. insurance through her husbands company. After ten years of care - I no longer feel guilty about this decision. We figure if a 2 hour visit every year is good enough for one sibling and a 2 day visit every year or two is good enough for the other sibling - then certainly ten years of care is enough already.

My husband spends more time in a month sitting in doctors waiting rooms than her other kids spend with their mother in a year! I clean her apt. while she is gone. We have done our best and are no longer in the physical condition to handle 'hands on' 24/7 care. Those days are over. We will not feel guilty over this. We just won't.

I know this may seem hard hearted to some - but we have done our best and everyone's best is different. We do not feel that we need to DIE or give up our life completely so that she may continue to live outside a N.H. And I can tell you that if I had to go back to the around the clock care I gave 5 years ago - I would literally die. I cannot go back to that - EVER.

So, basically, it all came to a point where we HAD to make changes in order to continue to care for my MIL. We HAD to take our life back. If I have to go back to NO LIFE except for hers - well, it just isn't going to happen. Bad backs, bad shoulders, surgeries and added years have taken their toll. Physically we are not the same people we were when this all started any more than my MIL is. Sadly, old age goes one way - DOWN HILL. I don't feel it is fair for an elderly parent to expect their child (and sadly, in our case it is just my husband and myself) to look after them at any expense to themselves. I would NEVER want my own children to do that and have told them so.

I know not everyone will agree with me but this arrangement has allowed me to continue caregiving without feeling furious all the time. If you, as a caregiver, feel overwhelmed, angry, resentful, furious - something needs to change. And the changes needed are sometimes the hardest because those changes feel 'selfish' when we are so used to giving, giving, giving. But, we have to have a life too.

I don't cope at all. I try, i have hired help a feww hours a day, i go to group meetings, but I'm miserable. It was the biggest mistake i ever made taking my mother into my home. She's 92 now she was 85 and in poor health when my husband and i moved her to our home. She completely disrupted our life. It seems she wasn't as sickly as she made out she just needs a lot of attention and knows she get it if she complains a bout being sick. My husband and i lost all our freedom. We couldn't go out because she didn't want to be alone. We couldn't have friends over because she would be the wet blanket over the group. I couldn't feed her first and get her settled (like i did when my kids were young) because she won't eat alone. My husband and i thought how much longer could this go on, we were both healthy, we would be free after she passed. So in the meantime we sacrificed. Unfoutunately my husband died unexpectedly. Everything we put off will never be. My sacrifice continues. Looking back iwish i had placed her in a good home. Her life is not more valuable then mine and i treated it and still do as if it were. Don't make my mistakes.





If I was a better person, or different, or more compassionate, or with better boundaries, or chose this time instead of falling into it without options to leave or improve things, end the relationship just so I won't continue to live like this everyday, so my mistakes and choices would be mine and not determined by someone else, if only....
Hey Brian. Your mom is lucky to have you.This is a great site to vent,some things you just gotta say or bust. This is a safe place.Although we do get some grump/judgemental ones now and then but they are few and far between. Mostly it's just us in the trenches..

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