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

Lizzie: Visiting 3-4 times a week is enough. More than enough. Mom has good care, and this opens up the opportunity for you to care for yourself. Every little detail might not be perfect at her ALF, but that's life. (Every little detail isn't perfect at your house either, right??!?) There is huge societal pressure for adult daughters to ruin their lives and their health in the service of elderly, declining parents. It's a sick expectation, and it takes tremendous inner strength to fight it. You did the right thing -- for you and for mom. Screw the naysayers. You gave yourself and your mother the best gift possible: you get to be a DAUGHTER again. Not a cook, maid, hand-servant, banker, chauffer -- but a DAUGHTER. Going forwarsd, mom's memories of you will be memories of a less frazzled "whole person." A daughter who has things to talk about other than the old loop of grocery lists, pharmacy runs and endless laundry. A daughter who is taking care of her own health. Bring your mother smiles and trinkets and news from "the land of the living." And make it a priority ti heal your mind and your body. Stay strong and stay positive. This is a win-win situation. Remind yourself to keep it that way -- by honoring yourself as much as you honor mom.

Thanks BlackHole. Your comment means a lot

Thank god I found this forum. I'm primary caretaker for my mom while she's been totally bedridden the last year. Have hospice help for a half an hour in the morning. My feelings are all over the place. I cry at the littlest thing, get real moody and snappy. I'm rarely out of the house unless my other half is home on the weekend. I feel very isolated and cry about that. I cry when moms happy, I cry when she's bitchy. I have no control over my emotions. Hospice help has so far sucked. Trying to imprint their way of living on the way we think.

How did my husband, myself, SIL & BIL cope? By having MIL (who has dementia) placed in NH. Was it simple, easy on all emotionally? No - but it had to be. We did research and found an NH that is above average. Mil is enjoying the social activity, still. We all live close by and visit her as often as possible.

Dear Utizie50,

How did you go about your research for a NH? What things did you look for? What was important?

Thanks,
LO

How am I coping is right! Living as a caregiver 24/7 is no picnic. I find it is difficult to get my needs and wants met. The ones I caregive for believe their needs and wants mean more than mine. There are days, when I could scream while other days I work on my own wants/needs. I attend a support group once a week but I don't think it is enough for me. It seems to me that that caregivers need time to themselves on a regular basis. Since I run my own business, I make every attempt to get involved in the community. Going to breakfast meetings and seminars is one way I deal with the stress of caregiving. At this point, the folks require assisted living and unfortunately those kinds of facilities are not plentiful in my area. A new facility is scheduled to open in 2017 but that is little comfort to me at the present. Going back and revisiting some of my old interests or hobbies has proven effective though I live in a small town. Every now and then I make a day trip to the "big city". In brief, I make every effort to get out and remove myself from their grasp. If I was unable to get away, I'd go over the deep end.

I am now just about caring for my bedridden 93 yr. old Mom " with one eye and one hand tied behind my back". I lost sight in my left eye from a retinal detachment 2 weeks ago and had surgery.The recovery takes about 8 weeks. All the while still caring for my Mom with the help of an aide 3x a week and nurse 2x. My husband helps when he is not at work. How I miss those little driving trips out for an hour or so. Went with my husband to the grocery store and it was a bit scary. My depth perception is really off without the use of both eyes. I was in good health and feeling I had things under control until this happened. My eye exam at the beginning of the year was good.... The doctor says it can happen as people get older and even earlier in very nearsighted people. I had floaters and murky spots that I thought were from a sinus infection but it was the retinal detachment beginning.
Somehow I get through each day of caregiving though it takes me a little longer now to do things. I am only in my 50s but I often feel I am never going to get my life or my full sight back and just go one day at a time. Maybe I am too pessimistic about things but after the last year and a half of Mom going down so hard and so often and now this, who wouldn't be pessimistic!!

Mackskid, I totally understand what you're going through. I've been caring for my mom since 2010, but in this past year her condition has really worsened and now, quite often, she doesn't recognize me or my father. I cry now at the drop of a hat. I was on the phone the other night with someone with whom I'm collaborating on a book, and, in the middle of the conversation, I just lost it and started crying (happily, he was sympathetic). Childhood memories keep coming back, there seems to be so much more depth to everything I do now. It's a tricky, difficult time for all of us.

I am trying to stay positive and be more grateful for my own health. Instead of thinking you are not living your own life try thinking that this IS your life and you are here to help her and you are very important to someone.

I believe that I know your feelings. The resentment, the guilt, the anger, being tired and trying to juggle these emotions. I go through this often. Your loved one did not ask for this situation and only loves you. Try to be positive and think of the love and care you are providing to an important person in your life. You are loved and needed.

I am trying to do the same. I hope you find some peace.

Thank you, jgsjgs. Your prespective is just what I needed. I tend to skip gratitude and go directly to AAARGH. Not healthy. Gotta work on that. :-)

PERSPECTIVE (good gravy, these typos!)

LastOne: Well, there are a few in our area. The one where MIL resides, we had visited several times. We were impressed by the cleanliness, the ratio of aides, nurses to residents, activities for the residents. We had the advantage of knowing a couple of other elders in the family that had been there and they & their immediate families were positive about it. Go online and access your states website and see if they rate NH's in the state but by all means visit the homes and see for yourself.

Lastone, there are articles on AC explaining how to choose a nursing home.
Go to the top of this page, click on the blue navigation bar, Elder Care.

OR, enter 'How to choose a nursing home' in the search bar, above, top.

Correction, click on Senior Living.

Has anyone noticed we use the word cope a lot in care giving? Well what does it mean? yep I am sad enough to look it up
to face and deal with responsibilities, problems, or difficulties, especially successfully or in a calm or adequate manner.

Well in that case I don't cope. I thought I did until I read the last 4 words adequate I manage ......calm? not so much!

Many times we are just coping. Few of us could say we are thriving.

Yesterday I coped better than usual. I finally determined that Mom has vascular dementia, though not diagnosed specifically. From what other people wrote on here and from what I've read, it fit perfectly. And yes, I trust my diagnosis.

Yesterday we were scheduled to go to my brother's house for a late Thanksgiving. Mom was in poor shape and I knew it was going to be a hard day -- like throwing a heavy bag of gravel over my shoulder and climbing uphill with it. She was going back and forth on whether we should go to my brother's. He lives about an hour away and there will be a house full of people we don't know. She didn't want to go, but felt she should. I knew we shouldn't go, so I told her that we weren't going. Period. I knew it would be horrible.

She was relieved, but felt guilty. I knew my brother understood why we didn't come, but my mother imagined he was upset. I realize sometimes my life is lived for the convenience and nonsense emotions of other people, and that really needs to stop. When she talked about how we should really go even when she wasn't up to it and I thought it a bad idea, I finally told her that I had no need to impress my brother. It was sad when she told me that she needed for her and me to impress him. What?? Huh...

Oh, well. Can't logic with an illogical mind. I didn't try.

I am learning a lot reading caregivers of loved ones that have dementia or something other than cancer. So many difficult situations. It has to be so hard to stay positive and not take things personally. We all carry a burden but some of you have too much on your plate. I hope you can find ways to lighten the load. its so hard to make sense of it all sometimes.

I like all of you am taking care of my 83 yr old mom, 14 months ago I moved in with her, giving up my own place, my freedom after getting divorced, but I wouldn't have it any other way. She took care of me and now its my turn to take care of her. My mom has COPD, CHF, AFIB, CKD, DIABETES and she is incontinent and 2 weeks ago was rushed to the hospital with a collapsed lung. She is in very poor health, she is unable to walk. I have 2 brothers, one of which does NOTHING! My oldest that is 10 yrs older than me is the one that helps me. My daughter and son help me too. I have a nephew and niece from the POS brother and well the apples dont fall far from the tree!
There are days I want to scream, and yes I use the finger pistol, but that is a normal reaction. It is very stressful!!!!!!! But I have learned you have to make time for yourself. Even if its only 2 hrs. I volunteer for a rescue which I have been doing for 5 years, so 2 weekends a month for 4 hours I have an event that I do, and my brother comes down and takes care of my mom while I do that. My daughter comes twice a week and gives her a bath. It would help so much more if my other brother and his kids would help, my niece is an RN for gods sakes.
But in the end, we who are helping will have a clear conscience and not have any regrets.
I know its hard, but think about when your parents raised and took care of you!

Cope while on Mr. Toad's Wild Ride? All I am is resentful because my parents had 25+ years of a fun filled exciting retirement doing all sorts of great things, plus 2 days a week of volunteering at a local hospital for decades. Neither had to take care of their own parents.

I really believe if we had a crystal ball and could see into the future, our parent(s) would be shocked by what has happened. I doubt my parent's grand plan for me was to lose sleep waiting for the other shoe to drop because of their choices which weren't elder friendly. And to be under all this stress, and here we don't even live under the same roof.

My Dad had said to me that he and Mom didn't expect to live this long. And I am thinking at what point didn't they see that happening? And why didn't they plan ahead like moving some place safer than staying in a 3 story house with all those stairs. And did my Dad think shoveling the driveway was normal for someone in their 90's?

My retirement? When? And do what? My health has taken such a nose dive due to the stress, that I have no desire to travel anywhere.... that ship had sailed a few years ago. There are times I think my parents will outlive me.

My friendly neighbours are older than me, she is 75 and he has to be in his 80's. One day we were discussing what I had done to make the house more accessible to accommodate my mother and I mentioned to her my belief that people wait much too long to make the transition to a seniors apartment and that just makes it more difficult, that my plan was to sell and downsize at 75. She got a thoughtful look and asked "does that mean you think we shouldn't be changing our house but we should be moving to an apartment?" I had to extract my foot from my mouth, but really....yeah, that's what I think.

cwillie, what you wrote is the best solution. One of the biggest problems I've seen when it comes to elder care is not wanting to give up a home that has become a burden. A person may become old and unable to walk well. Maybe their mind is not as good as it once was, but they want to remain in a large house. The only solution is for someone to move in with them.

What makes far more sense is to get rid of the house and move to a place that is better for them. No more maintenance and worrying about the things that go wrong with houses, plenty of people around who will keep them company and watch out for them, things to do, transportation provided. I have no problem deciding what I want to do if I live to be old. It makes so much more sense than asking someone to give up their job and family life to accommodate me.

Our thinking can get so clouded with emotions that we don't think logically at times. We can take care of our parents without having to harm ourselves if we can only get them to accept some change in their lives. Inability to accept any change is what can make it so very hard.

JessieBelle, I agree. Maintaining the family home is time consuming and a real burden for those of us caring for parents at home. When something breaks, I have to get it repaired. The list is endless.

yogagirl, I talked to my parents about relocating to TX several years ago. I couldn't get them out of their house. If I had not moved in, they would have remained alone until their was some type of catastrophe that forced them to move. I never realized that when I moved here that I would still be here 6 years later and counting. My mother still refuses to leave the home. I have a hard time understanding the attachment, I guess because I've been more mobile in my life.

A huge question is if it is fair that the life of one or more of the children be disrupted so that the parents will not have to move from their house. If we think of this logically we know the right answer. What cwillie wrote is the best solution for everyone involved.

Yogagirl, you are so right. During the last two weeks the fridge needed repairs, we were told the furnace needs replacing and the clothes washer has malfunctioned. All this and who knows what will happen next. I have to agree with cwillie, my folks should be in a seniors facility/apartment but good luck trying to convince them.

Maybe in the future people can be encouraged to think this way about communities, instead of holding on to the albatross houses. It would free the houses for young families to purchase and get seniors into a more healthy environment. It would take much stress off families, knowing the parents were in a good place. It would also give aging folks a sense of knowing what they will do. We have a checklist of milestones in life up until age 65. Maybe we should extend that time to include: move to senior community at 70. Even seniors who are doing well in life can enjoy a community if there mind is set that it is a good part of life.

Exactly Jessie! If we make the move consciously and in a positive frame of mind it can become a plus instead of the negative it becomes when we are forced to change kicking and screaming all the way. And we would actually be young enough and fit enough to take part in all the activities and amenities that these communities offer... we really could be out there dancing the cha cha and popping off to the casino with friends like those commercials advertise lol.

I think this could be accomplished, but it is going to mean that people providing senior housing will need to stop seeing seniors as cash cows. When I see the cost of some of the senior communities, I wonder if the streets are paved with gold. A senior should be able to live independently for the same price a younger person pays. It is so unfair to charge someone who is 50 $1000 a month, while charging someone who is 75 $2500 a month for the same type place. What is with that?

JessieBelle, It seems so obvious that someone is cashing in on someone else's problem or situation. I am so disappointed in society and the whole system of senior care.This last year and a half with Mom's rehabs, etc. have been a real sad eye opener for me. It is as though they are holding a gun to the old person"s head saying " we will care for you somewhat...but give us all your money and then some..... Then we will scoff at your offspring for being concerned about your care at the facility".

I'm 53 and dreaming of selling to buy a one level home.. Paying someone else to mow and shovel...

I know I wouldn't be happy in a local over 55 community.. To close to neighbors and busy bodies ugh!

I could handle a few winter mths down south in a community because it will mean I'm away for the nasty winter...

Uh oh, I see problems brewing for a&a's family. Thirty years from now her children will be on the then-version of AC, asking what to do about Ma.