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

I want to thank everyone for their thoughts and prayers. Mom doesn't do well without sleep. She usually sleeps about 17 hours a day and has been on a fairly even keel with that schedule. After her fall she didn't sleep. I thought she was going to sleep last night. I had her all set in bed before midnight. Then she said she wanted to go home and started trying to get over the bed rail. She has back pain and she strained herself. This is an ongoing problem. This is her home, but she doesn't know it. It doesn't matter how many times I tell her. She bought this house 23 years ago. When I ask her where home is she can't tell me. Eventually, I took her to the bathroom and back to bed and she went to sleep. She woke up this morning and is doing better. She has bruises and pain from the fall. I spoke with the care nurse at Mom's PCP office yesterday. She knew Mom was in bad shape. She started hallucinating again because of the lack of sleep. She talked for hours last evening to imaginary people in the room. The nurse gave me some resources. I am going to get some help. Overall, she seems to go downhill some more after an event of this type.

When I started reading the letter I thought I wrote it about my wife. We go thrust the same story every evening and sometimes in the morning. I'm keeping the answer2the same in hopes they will help keeping her calm most of the time. I do talk to her with what little i know of her early days. The 17 years we have been married is none existing in her memory banks. Her kids won't talk to to her because they don't understand how much of her brain has died. I hang in there and ask her old friends questions. I am a 73-year-old and she is 86. So far I can help answer some of her questions. The only one i can't answer is "Why is my mom out whoring around ".

I pray for you John and all of us!

Sorry for your problems, John. Do try calling for some resources in your area to see if they can help! Prayers to you and your mom.

Wow! Some very interesting comments, about abusive parents and/or in-laws. I guess I am sort of an odd one out. I have lived in California for 40 years, coming from Ohio for my husband to find work which was non-existent at the time back there.  Both of our families still in Ohio.  Our son was six when we moved here. 

To keep a long story short (I hope!), After being here seven years, my husband was accused of a crime he did not commit and has been in prison for the past 34 years. Because we had already been married for fourteen years and I knew he was innocent, I stood by him. Needless to say, the lives of my son and I were totally disrupted and I worked just to survive, and stay here with my husband. I have had several wonderful jobs which helped me to increase in levels that increased my earnings but it was never enough to help us get ahead or for me to afford an attorney.

Every year, however, I managed to save enough money for a flight back to Ohio to visit both of our families. My mom and his mom were both in great health, other than my mom having really bad arthritis.

But, last April (2016) my mom was either dizzy or fainted on the way into her bedroom, bashed her forehead and fractured her neck. She was living with my brothers son and grandson (my nephew 36 and great nephew 15) who were both in their rooms and did not see exactly what happened. Called 911 and called me and I got the next flight - ICU and surgery - 3 weeks; acute rehab 4 weeks; standard rehab 4 weeks; home health rehab 4 weeks. I was there from April to December staying with her in the ICU, in both rehabs and at home. Sleeping in chairs and fold out beds.

Had to quit my job and bring her back to California with me. I was one year shy of retirement, so not a big deal, as the difference in SS payments of $100. Although, would have preferred to have waited as I could use any extra money!!

All this leads to me saying that I am NEVER sad, upset, mad, frustrated - or anything else you can think of, as my mom is is my mom - luckily she is not a pain in the neck and is constantly telling me how much she appreciates me. She has some memory loss due to smacking her head so hard (concussion), and has her moments of being stubborn about some things, but they are so few and far between.

I already had an "exhaustion" problem that no doctor has been able to diagnose, and now am even more so! The house is a mess ( I live in a single apartment, as it is very expensive living in California!), the dishes aren't always done, things are dusty, but I have the pleasure of my 87 year old mother's company for a few more years. She has severe Arthritis in her knees and elbows, can use a walker minimally in the small space we have. I have to help her get on the toilet, help her bathe and dress, fix her meals and take her to doctor's appointments. I do them all joyfully. She took care of me and I will take care of her for as long as I am still blessed with her in my life! Yes, I am tired and don't get all the things done I need to and I don't have any family here to give me respite, and I don't have the funds to hire help. But I am happy and she and I have a good time and laugh with each other every day! I wish you all love, peace and happiness.

I know this is not very helpful to those who are suffering with difficult and ungrateful parents.  I send you prayers for love, peace and happiness!

John,
I think that at this point the only thing we can all do is make sure they are 'safe' (where they don't hurt themselves) or, are in any pain... She may need to spend down her money to go on medicaid at some point... Hasn't anyone suggested anything for you?... Perhaps calling an eldercare advocate... Look up any kind of eldercare or senior services with your town or city... keep calling, because you can't afford to get sick... Yes... praying for you and your mom!

Praying for you both.

I'm not coping very well today. Yesterday my Mom got out of bed without calling me for help. She fell in the bathroom. I couldn't get her up by myself, she can't help any. I called 911. The police was the first to arrive. We got Mom up and onto the toilet. Then we waited for the ambulance. They determined she should go to the ER to get checked out. They did a CT scan and xrays and didn't find anything wrong, just banged up. I brought her back home and she was more confused than normal. She said this isn't where she lives and doesn't understand why all her things are here. This morning she was awake early. I took her to the bathroom and gave her breakfast. Now she is saying she has to get up to go to her sister's funeral. Her sister died in 1972 at age 50. When I tell her that the year is 2017, she won't accept that. She says she is 54(she is 91). She cries in between saying she has to go to the funeral. I am so stressed out I think I may have a heart attack before the day is through. Pray for me.

Three questions for caregiving : 1 is it a job with not enough pay?
2 is it a career with not enough recognition?
3 Or is it a calling. Working for God. He provides all. : ))

I keep reading, what do i do with all the questions. Answer them, yes later, I don't know, I find out and let you know. They didn't tell me. I'm here for you and no one else. No telling who you are. Son daughter, husband or wife. Just in here or they will let me know. My wife has alzheimers and asks. Our second marriage and she's waiting for her first husband who is in heaven to come back. I tell her that ill wait with her until he gets back. She looks for her kids to change their diapers. I tell her I will do it you rest we have a big day coming. None of which she will remember. Tomorrow is a new day. She used to dust while I vaccumed. She would get her cloths ready for the next day. Today keeps slipping. I let her sleep longer and have breakfast no matter what time it is we go to bed when tired. Its not easy but I promised. Thrust the good bad and ugly i will be here for you. God bless all of you.

So true to Heart 2 Heart.

Erin... Can you imagine how many millions of people live at home that have dementia? (elder abuse... what a joke). Many of these people at home have no funds, family or friends to help them... or, that 'want' to help. All the best!

John... Keep on trying... You'll stumble on to something... Talking to a lot of people will no doubt connect you or point you in the right direction... Keep us posted. All the best!

Hi John, I'm getting a needs assessment done by the local nursing home ( all levels of care). Just to get on their radar. My mom sees their dr already and has a dementia diagnosis. I just need to have back up if something comes up where I have to be gone overnight. My mom bathes ,dresses, takes her meds. Doesn't cook but is very cabable taking care of our 2 dogs. I'm getting this " needs assesment " done next week. I'm going to tell her that I could be held negligent if I left her alone over night. Which is what the needs assessment nurse told me when I called. She will not want to see that happen to me. The nurse called it elder abuse. So I know she will accept that if I have to leave over night , she will have some one here. Going on a tangent here, but elder abuse ? Really. ? She performs so many ADL s. She worked and drove up to 10 months ago. She has a diagnosis of dementia. So I'm kind of confused as to how leaving someone who is functioning is construed as elder abuse. But I will not leave her over night and I know she will be ok with the nurse staying here just to make sure she's ok. Want to clarify,  nurse said " could be construed as elder abuse, leaving  a person alone with diagnosis of dementia.   ". Believe me ,  there are some days she's totally repetitive, and confused,   Other days she's almost normal.    So I do agree,  she should not be alone overnight

John, Please call your local Counties AGENGY ON AGING, just type that into your search engine or Google it! They will listen to you, and send out someone who will do an interview with you, and your Mom, and a home assessment, to see what services are available to you and your Mom. 

And forget about Refusing help with the ADL's, as she Will need those, when you are out for a few hours on your own! And Yes, we understand that your Mom doesn't like having other people or strangers in to care for her, but TOUGH! It's You we are worried about,  and you must get help for YOU! Your Mom Will Adjust! You can try arranging your time out of the home, after you have taken care of her morning routine,  have her lunch all ready,  and leave her with the senior sitter, from 11:00am to 3:00pm, this way, you will get a solid 4 hours out if the home a couple of times a week,  to shop my catch a movie,  lunch with friends,  or just plain old You Time! Start with a dry run, having the sitter their caring for her, while your away elsewhere in the home, or out working in the yard or garage, close by, but out of site. Again,  she will adjust,  and tell her it is not an option!  You Need Time to get things done! 

Another option is (or I have found) is going into your local Senior Center. They often have one of those cork boards on the wall, where local "Senior helpers" advertise their services. Yes, it may cost a bit, but it is worth your sanity, to get out on your own once and awhile. They aren't that expensive, but you do need to interview them, and check into their background, licensing, bonding, first-aid certified and such. Also if they are CPR certified, in case your Mom is not a DNR (do not resuscitate).

You've just got to find ways to get a break. Also, speak with the AOA, about getting some RESPITE CARE for you! Sometimes there are waver plans, that assist you on getting some time off, whether someone comes into stay with your Mom, ore she goes into a career center. It is a must, as you sound as if you are suffering from Severe Caregiver Burnout!

Good luck, and please, look into some of the suggestions that folks here have given you! Take Care! Stacey B

Erinm60, I tried that. I never got a call back. Apparently, they will only talk to people if the person is currently under hospital care. I also tried to talk to the social worker with the visiting nurse association, but she doesn't talk to you after the person is discharged from their care. I'm on my own right now. I don't want to place Mom. She doesn't need medical monitoring. I just need to assist her, take care of her needs, and keep her reasonably happy. She trusts me and doesn't like other people around. I am going to call another agency tomorrow. They say they provide more personal care services rather than just ADLs. I hope it works out so I can get out to get some things done.

Hi John6749. what do you think about calling a local hospital ( not the drs office).and asking to talk to the social work department. I used to work in a hospital and I know social workers help to get people placed. Not saying you want her placed , but possibly they could provide info on where / who you could call for help

The doctor's office has thrown it completely on me. I thought they would help but then they called and said it's up to me. I told them I don't even have time to spend on the phone, but they just don't want to get involved. I have been talking to agencies for over 6 months just to get someone in for 3 hours a week. I want someone to take care of Mom for 3 hours while I am gone. They are mainly interested in doing ADLs. I don't care about ADLs. I do all that. They tell me they aren't confident that they can replace me for 3 hours. Their preferred client is more well than my Mom. I am still looking.

John,I feel your pain and aggrevation with all that happening with you and your mother.John you need to get help with all of this maybe some homemaker services or home health that can come and be with her or even Catholic charities to help you.Please take everybody advice and not only help your mom but yourself also.

Hi tgengine. Completely understand. A, B, Z. I know. It's hard. My mother and I walk the dogs nightly. Always same statements made. Always . Pretty much in the same order too. Tonight. I actually started to spell in my mind "dissociate., dissociate, dissociate. I try so hard to be ( can't think of the word). Oh no! Ok to be non chalant, blazee? Sp? About the repitition. It s not easy. Just got to keep trying.

Also... Talk with your mother's insurance to see if they cover home aid or any other benefits she may have to help you out...

John agree with Heart 2 Heart. This is too much for one person.

Oh John!... There has to be someone you can ask to help you with your mother. Can you start calling around ... like an ombudsman or ask her (or your) doctor or doctor's office who to contact for help. Your mom needs more help than you can handle and it's not good for you mentally or physically to keep going through (all of) this by yourself!... Hopefully, someone else will chime in here that has more information on who you should contact.

I feel like I am getting worn down and stressed out. I only get 3-4 hours sleep a night because of my mother's confusion and agitation. I am the only one to take care of her. There are no friends, family, or neighbors who care about her because of the way she treated people and pushed them away in her life. She doesn't mind putting any amount of burden on me because she thinks I am a paid worker. She doesn't know I am her son. Sometimes she talks about her son, but says she doesn't know where he is. She needs assistance with everything she does. She has been in bed for the past 2 1/2 years. She doesn't know she owns this house. She thinks her hair and teeth belong to someone else and she has to get hers back. I am trying to cope day-to-day the best I can, but it is very difficult. I can't leave the house or even go outside.

Have you never explored the other threads since being on the site TG? I have gained so much insight into my extended family and life in general from reading the many varied threads available here!

I get it, reading your posts are helping me to realize that (a.) Dad will never change. (b) I have to change. (z) I have to not let it bother me.... did you see I went to (z) because there is so much other stuff in the middle. This week started trying to take care of myself more. Last night at dinner I sat there and counted how many times dads comments were directly about him in the conversations at dinner. 100% of his remarks were about him. I had to laugh instead of getting mad because he doesn't get it. He kept repeating (not a dementia thing) to everyone who would listen "I went out in the rain, I may melt because I am so sweet". Even on his nightly phone call. So I have to laugh. We talked about my daughters promotion and her job and anything he had to say was directly about him. He cant have a normal conversation. It is so like eating with Cliff Clavin. He even had a story about him and a "dangling participle" which we were all talking and joking about trying to figure it out. So this is going to be my life, letting it roll away, laughing it off and trying not to let it get to me..... lets see how this goes.

You too Heart2Heart

I wouldn't either Erin... Definitely wouldn't!...
That speaks for who you are...!

Hi heart to heart. Agree totally. I never want to burden my only child with my care .

Good action plan Erin... I even put a back deck off the kitchen (with the remodel of my kitchen... with my mother in mind), so she could sit there and have a cup of coffee (or?) and look at the nice backyard, birds, etc... (nothing satisfies... I pray to God I am never like that or ungrateful to those who take the time for me... I pray and pray these days).

H2H , stressed out, tgengine, we are all in the same boat We can't control our parents but we can control our reactions to the things they do and say. Easier said than done I know. I try to focus on what some one wrote on here about having an action plan. Things I want to do when this is over. My mood can change in a minute based on what she says or does that drives me crazy. My daily grocery list. The loss of the first floor because she sits there all day. What I meant last night when i said to my husband that I'm taking control back is that I'm not going to allow her statements, requests etc to dominate my happiness. I really going to try to disassociate my self. It's sounds nuts. But to put a mental shield up. I'm going to try and enjoy my life.