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

sightseeing1 I honor you for giving this your best shot. But we are not superhuman. I would implore you to do your best to get Mom on Medicaid and into a home of some sort so that she has 24/7 professional care. Your sacrifice is something that is up to you. But when it starts affecting those younger and most vulnerable, it is time to change things as best we can!! ((HUGS))) to you and yours. Let us know what happens!

Hello Last One. OleGrumpy here. I DON'T COPE WELL AT ALL. However, when I use "humor" to lighten the load .. so to speak, it helps a little. JUST a little. And sometimes I get to my apartment, and I have a beer. Sometimes two. It helps to relax me a little. I think also this site helps a little, too, just knowing others are feeling the stress and strain from caregiving, too! I am sooooooo thankful that I still have my Mom with me, but I DON'T feel thankful when I am the one to be her chauffeur, grocery shopper, mail lady, housekeeper, and sometimes...cook. It is overwhelming at times. But, hang in there. And remember, YOU ARE NOT ALONE. (prayer helps, too) God bless you!

olegrumpy and anyone who has a hard time coping (me! for sure) I'm having a hard time lately being patient. Your name gave me a chuckle because I've taken to reading "Grumpy Cat" quotes. Anybody ever check those out? First saw those on Pinterest. Then I googled Grumpy Cat. Even at my lowest they make me laugh. I love that cat!

I am not coping too well at the moment. Bedridden Mom is sleeping all the time, hard to roll to change her, not eating. Then tonite my husband informs me after a heart procedure that corrected his A-fib last April, that his heart went out of rhythm again tonite. I have been awake worrying since midnite. I am still recuperating from my retinal detachment surgery too and can't drive yet. We are only in our 50s and I wonder about stress. I find myself wondering what the heck is happening to my life which used to be so good.

The worry and the stress are big problems for your health. I've been having trouble sleeping (actually just not sleeping at all) because I would lay awake and worry....much like you are doing. I finally started taking Advil PM and that at least knocks me out for awhile. Just a few days of not sleeping was really affecting my health. So, maybe ask a doctor but make sure you are getting rest. We do so much and wear ourselves out physically, emotionally and then we don't sleep. I am learning that taking care of myself is very important and it doesn't take long to fall out of good health. Do you have anyone that can help you? Probably hard to find someone to watch your Mom and then someone to take you out at the same time since you can't drive. Enlist anyone and everyone you can. Don't be a hero (although you already are one) and accept help where you can get it.

The other thing that I noticed with sleeping is there was a lot of unfinished business that was bothering me. Things we don't want to deal with like end of life issues, funeral arrangements, updated wills and power of attorney POA, what if something happens to me? Do my kids know what to do? So, I made a list and started working on all these things. Talked about what both my wife, who I care for, and myself as to what we want when we die, lawyer updated the will and POA and made a binder with everything I could think of for my kids and discussed everything (house, mortgage, wills, insurance,etc). These were some of the things that were keeping me up at night. It helped some. Maybe, there are some unfinished business or things that you can do to help ease your worry at night.

Taking care of the caregiver has to be a high priority. Can't do it all the time but it has to be high on the list of things to do. I hope things get better for you.

jgs, you just answered the question for me about why we caregivers don't do things like going to the doctor ourselves. Our lives can be so un-fun already. The thought of putting another un-fun task in a day is too much. I hadn't thought of that before.

The thought of it being unfun is very true but for me it has gotten downright frightening and nerve wracking. I want to get a few more good years in...we are in our 50s but it seems like everything is being taken away. It has been one thing or another these past 8 years. This makes it beyond nerve wracking to go to the doctor of any kind for anything or routine tests. It seems like I am always doing something I have to do...and never anything I want to do or that is fun.. I am also beyond sick of doctors offices and hospitals after the last years of my husband's heart scares and procedures, my Mom falling, broken bones, delirium, UTIs, etc. emergency room visits in the last 18 months.And then my retinal detachment 3 weeks ago. We used to never have to see a doctor not that long ago!

When I hit 50 I started to understand why old people talk about their health (or lack of) a lot. First was menopause and the weight gain that goes with it, multi focal lenses in my glasses, then realizing I don't have the strength and endurance I once had and not being able to restore it despite exercising, hearing of peers coming down with cancer and heart disease; our bodies are starting to fail us, definitely not fun.

From one commenter - "Yes, my ability to live my life as a wish is certainly restricted and I am often emotionally frustrated and angry as well as physically exhausted. But if I were to quit and institutionalize my mother, her capacity to live any type of meaningful existence would be over."

But isn't the commenter's capacity to live any type of meaningful existence over? And isn't s/he in fact destroying her mental, physical, and financial health - to care for a person who is no longer "there", or, if there, who has already "had their chance"/taken their best shot at life?

My MIL moved in w/us 14 months ago. At the time she had moderate dementia. She went from living alone as a widow for 10+ years to never wanting to be alone for a minute - so we (my husband and I) could no longer go out and do anything together. After a few months she decided that SHE didn't want to go out either - not even to sit in the yard. Ugh!

I agree completely with oldcodger - one should NOT give up one's life for an elderly parent. I wouldn't want my child to do this for me, and it is financial and emotional (and marital) suicide.

There are a few things we could have done differently at first, but her dementia has progressed rapidly and next week she'll be moving into Memory Care. We look forward to getting our lives back. We could never have done this - as some people here have - for several years. I cannot understand how people do. It is completely unreasonable. I and my husband have a life, and hopefully 25-30 more years. In addition, I really want to get back to work - I had to stop in July as she worsened.

We intend to enjoy theses later years - just as my MIL did hers. She is, of course, completely clueless as to what we have given up in the last year+.

We do not blame her in any way, and appreciate what we have learned from this experience - including the decision to never allow our own lives to deteriorate to this point, by following the advice in the book, Final Exit. Life should be about quality, not quantity, in our belief system.

I expect that I will become an active advocate for first, assisted suicide, and second, the option to leave this life when one's cognition/personality is deteriorating to the point that one is nothing more than (1) a burden to others, and/or (2) a revenue stream for our for-profit "healthcare" system.

I think one of the saddest things is to imagine being nothing but a burden to those one (once) loved - once, because in dementia/ALZ, there's no understanding left. I have no intention of ending my life as either one of the two options mentioned. (But then, everyone knows I'm a pigheaded stubborn b*tch. And I'm much more afraid of "living" with dementia than dying.)

JessieBelle, that was true for me, too but I now make sure I am doing things for myself and that includes having someone "babysit" so you can do something, anything. Go to a bookstore, library, shopping, sit in a park, take a walk, have coffee or a drink with a friend. Most important, don't feel guilty about it. We have to make some time for run otherwise we are living for this future time when things get better and this may be it!! So make some fun!!
Katie, I too am in my 50s and there have been a lot of doctors and stress and feeling tired and old. I started taking walks for an hour and a half four times a week in a local park. That helped my stress and my strength. I do miss some weeks because there is so much to do but I try to stay on track and call in people to help when I can. lately, I have not had the time and its so easy to blow off doing something for yourself. Do it if any way possible. We have to make the best of the time we have now and not wait for some better time. I hope everyone can find some way to help themselves and enjoy life.

To Anitag61: Your post aligns with my earlier one. It takes great courage to acknowledge, accept and know that life without quality is existing, not living. If we have done all we believe we can, want or choose to do for an aging parent with dementia at any level, we can then decide to live our own lives without guilt. I would never want (and certainly not expect) or burden my only child to care for me once I could no longer care for myself. I too have had numerous conversations with other like-minded folks about the right to "check out" at will; the universe grows larger as options for quality senior care diminish unless one has money. More advocating for both issues is needed.

Jessebelle,
You came up with the perfect word - unfun.
Why ad more unfun?
Exactly.

Jgsigs, you are spot on. Caregivers need to concern themselves with self care. All too often caregivers pay a high price health wise.
JessieBelle, unfun is right. High five to you!

Overwhelmed. I take care of my Mother 24/7 Just lost my Father 9 months ago (Wow its been nine months already), I never had time to grieve no did my mother because she had a heart attack just 2 months after his death. Prior to June my Mom would drive to 7 grocery stores in one day just to get the best deal, read a book every few weeks, clean and cook. then After her Heart Attach and her open heart surgery she never was the same. She needs to be watched 24/7 and I'm the one. I had to quit working and now must file bankruptcy. I try my best to do everything right for her but it gets overwhelming. I haven't slept in a bed since June. I have slept on chairs at the hospital or most recent since Oct 18th I've slept on the living room couch next to her bed. Incase she starts to choke and cant breath I can pop up and help her. (Which has happened every night thus far) She has a tracheostomy that is 13 years old and her esophagus was damaged when they removed her trache for the open heart surgery. The anesthesiologist needed to put a tube down her throat. Man did that mess it up for her. She use to be able to eat, swallow. Now she can't. Thanksgiving was so sad because she just wanted to taste a bite and almost died for choking. I honestly think the messed up but they wont admit it. So now she has to be fed thru a G-tube. they have her on a 17 hour drip. her feet go purple in a second if their not raised above her heart. the doc. are still trying to figure that out. Oh and she had a stroke right after the surgery but they didn't catch it. there's more but I'll save that for another time. I feel guilty, tired, angry, and unrecognized. It's like life went on without me. I only see my boyfriend every other weekend. but I really only see him for an hour, even though he stays over night in my old room. I'm too busy with Mom. I get to go out one hour for dinner and that's it. I don't mind but I can tell he is starting to. I feel so all alone. and my back hurts.

1krazyKat, you need solutions and and support. I take care of my mother who has Alzheimers and dad with Parkinson's and a feeding tube, with more help now from a CNA and my sister. Didn't your mom go to a cardiac rehab hospital after her surgery? When my dad first had his fall 3 years ago, the social worker at the hospital did an assessment before discharge that led to rehab and some support that gradually increased when my parents health got worse. You at least need some respite and to sleep in your own bed. Others on this site with more experience than I will have advice. You are exhausted and need to protect your own health. Nice that your boyfriend is there for you.

I had my mother for 24 years..day in day out.. Had agencies come in during last 4 years but most of them did not do their job. It ruins your own health. I could not nor would not ever do it again. Mom was in the poop stage..eat poop, play in poop, smear poop. They all do it. She would go out the door is she got a chance. According to DE law you cannot lock them in their room. Whoever made this rule never had to take care of anyone with this disease. They removed her from my home and she went to live with my sister in SC because I locked the door one night cause I was afraid she would get out of house that night.

Dumb law that you can not lock the door. Guess they are thinking about fire or something rather than your love one running out into the street in front of a car & getting killed. We live on a major highway. At wits end.

I put a chain on the front door ,she can't reach it. As a fire hazard i think thats only applies to thr bedroom doors.

You can get alarms for the door that are activated when someone tries to unlock the door - some of them are voices too, which is a bit weird to me but apparently works, that say go back to your room you are safe there or something you can tape yourself. You can also get floor alarms so that when they stand near enough to the door to start the unlocking it will raise an alarm. Lauri you may be right but over here (UK) it applies to any door that prevents egress in the event of fire. It has been a major problem for care homes let me tell you although they get round it by having doors that open automatically in the event of fire but they are bloody expensive

After years of 24/7 caregiving and watching my mother decline is a difficult task and it really does a number on the stress level. My body feels kind of numb at times and it is difficult to get 'motivated' (let alone feeling happy again) to move forward,in 'my' life... All this while we age... How do you get 'motivated' and (really) feeling a self worth again (my mother and I are not the closest due to her stubbornness and it makes caregiving more exhausting). I've tried just about everything but when you feel 'rejected' mentally it makes,it all the more difficult. Do any of you feel this way?

Heart, it is hard to feel any joy at all. I try to generate it, but as the years wear on, it's just not there. It's sad that my only joy right now is hearing the rabbit's feet running on the floor when I'm in bed. That always brings a smile.

My mother sits or walks around the house all day with the most unpleasant look on her face. It's a look that says she is in absolute misery. It has been like this for years now. She feels so bad for herself. There is no way to snap her out of it, because she dwells so much on how bad she feels. To tell the truth, feeling bad is her late-life career. It is so hard to live like this, but she isn't ready for a NH.

I'm having a hard time getting motivated for Christmas. I used to love cooking candies and cookies for people. The secretary and I used to have a Christmas party each year for the people at the college. Now I'm thinking I need to volunteer at a shelter to warm my heart. But I can't, because I have to do Christmas in grinchville with some family who really don't care a thing about us.

So yes, I know how you feel, Heart. I don't think it is us. I think it is the circumstance of misery we face.

JessieBelle ,Heart2Heart and all caregivers out there I feel the same way. Trying to stay "Merry" isn't easy and is so exhausting when you are 14/7 with a couple of crunches. But I am determined to give it my best shot for my other son and 3 wonderful grandsons who will be with us. Holding out the 2 24/7's at home will be good! If not I will just ignore Thierry behavior for the 2 days. I've made up my mind. Those 2 days I'm claiming for me to enjoy. I'll let you know how I did.

I meant 24/7. Although 14/7 is not a bad idea!

This site continues to be a godsend for me. It is helping me cope.

I'm on antidepressants. The dose has been doubled. My interns, assistant and coworkers have all seen me cry. Oh yeah, and the whole church. I haven't slept in my own bed much since August when mom got back from rehab. Which means i don't sleep with my husband either. We both drink too much and sit too much. I do the nights. So the one thing i don't do too much is sleep. My knee has been ballooned for 2 months. My husband threw his back out. Both of us from hefting mom. I have at least one scar from one of her 'tantrums' and have been punched and scratched and yelled at plenty.

But i love her dearly and grieve for her that she must go thru this. She has vascular dementia. We giggle over bathroom absurdity and dance plenty to oldies.

And then there's this site which shows me people can and have given so much more than I. You all are amazing people. Happy holidays.

rojo1215 you are giving a lot! You are a VERY GIVING and AMAZING DAUGHTER. It is obvious you love your mother very much.

I don't want to be looked at as a cruel, indifferent person. However, we all go through various phases of life and we must grow and adjust with it. However, when the time arrives that someone you are taking care of becomes extremely difficult and abusive and otherwise very negatively affects your life - emotionally, physically, mentally - IT IS TIME TO WALK AWAY. If you choose to stay, it will most likely eventually destroy YOU. Is this what you want? I don't think so. YOU MUST THINK OF YOURSELF FIRST SO Y O U CAN SURVIVE. Not to take appropriate action to end a nightmare situation is insane and the day will come where you will know it and it will be too late - your life will have been destroyed. Don't do it.

Having read all the wonderful posts I could feel Your genuine honesty, and in many cases pain. It is definitely the loneliest most isolating Self Sacrificing Task any of Us will ever be challenged with, and to even contemplate taking it on One needs to be totally unselfish and completely giving. I Cared for My Mother for three years of 24/7 with NO break. Friends disappeared like mist, and Family came to visit, play with their I-phones, chatter between themselves while ignoring Mama, and once coffee was consumed I could hardly see their feet with the dust since they ran off so fast. At that time I remember feeling resentful towards My Siblings because they would never offer to Care for Our Mother and give Me a weekend off, but I managed some how. I adored Mam so much, and it broke My Heart to see Her Body buckle and wither to that awful Brain disease Alzheimer's so I Cared for Mama with the greatest Love and tenderness. Every day I began reciting poetry that Mother learned while going to School in the early 1930's and once She heard the first few words Mam was off reciting that poem. We sang very old songs together, and We made beautiful new memories. Sadly I lost My beautiful Mother, and best Friend on the Longest Day 2016, and memories are all I have left. What I wouldn't give to have Her back with Me for just one more day.

i hate it, im doing terrible stressed out, resentful but i had to deal with my mother my whole just not as a caregiver before, our relationship was never there im emotionally distant no emotion if embraced numb feeling in chest and a blank expression if a hug is ever recieved taught that to myself from disapointment of her being in for a short time then right back out she has delusional disorder so her moments of real reality are far and inbetween i get angry a lot. i feel guilt sometimes and give in to her wants that are not important but i try to be firm because she is like a kid no logical reasoning and no boundaries.

LastOne: My caregiving has ended. My mother is in Heaven. I don't put myself through torture. I did the best job I could as my mom had 2 kids, but the burden fell on me and not my brother. I am not angry. For you, push through the best you can and if you have some off days, let it lie! You are not God.

Hi and (being a Catholic), I pray and meditate for 15 or so minutes with a daily rosary at night. I go in my room while mom watches TV and sit down with my little book and beads. Works wonders!!! I pray for peace. She may not have peace, but I do!