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

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.

Praying for you both.

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!

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!

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.

I pray for you John and all of us!

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 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.

So happy you got some resources from the nurse. Hope you and your mom have a peaceful night. God Bless you both

I keep trying to reinforce to Mom throughout the day to never try to get up without my help. Everything was ok today. She had lunch, took her pills, then dozed off. She was awake again and she watched me fold laundry. Then she dozed off. I checked on her and she was sleeping so I was having something to eat. Then I heard her yelling. She was on the floor next to the bed. She said the phone was ringing and she had to answer it. There is no phone there and she can't hear. She hears ringing sounds in her head and thinks the phone is ringing. I got her back up on the bed. She had a lot of back pain before so I was giving her Tylenol and rubbing Ben Gay where the pain was. Now she is worse and has more pain. She needs to go to the bathroom, but she can't get up. After the h*ll I have been through this week, I am just numb.

John, I call 911 when my mother falls. This is because I can't get her up anymore, now that she can't help. I don't want to pull or push on her because I'm afraid I'll hurt her. The EMTs check her out to make sure she is pain free and uninjured. If anything is wrong, they will call an ambulance. If your mother hurt her back, it may have been the perfect thing to do. It would give her care while giving you a short break from the hands-on care if she needed to be admitted to the hospital. They may have also recommended rehab to help her regain some function. A good thing about this is that it would let you have a break from caregiving. Unless my mother was on hospice, this is what I would do. Sometimes we need a break. The ambulance will cost some money, but Medicare should cover most of the expense.

So sorry. Agree with JessieBelle. Praying for you and your mom

Where to begin?? Im angry most days these days. My mom suffered 2 strokes. Has dementia. That being said, the illnesses haven't affected her personality for the better. If she would not do things that are causing her rapid decline that she completely understands she's doing but wont stop because that feels better, to her I would be less so. Case in point..I have to prop her head up everyday because she refuses to hold her head upright or keep it NOT turned so far to the right that it cuases such pain to turn it straight ahead much less side to side to loosen it up. Will then stare at you as if that look could send you to the depths of hades bc you ask her to not do that because its hurting her more. Such fun...Im at the point after almost 4 years that if she declines to the point of having to get a feeding tube, bc her good hand is almost completely contracted from keeping it closed pretty much anytime her hand brace isnt on, that im just gonna place her in a snf or group home. My daughter graduated this year. All i think about these days is the last few years I've missed with my darling girl giving all my attention pretty much to a mom that could care less about her health but completely expects to be taken care of because its her right I assume. Im so tired of being a caregiver. Im going to try to move to Seattle or north Virginia in a few months. This journey is over for me. As bad as I feel for her, I've given enough. She wont even TRY. Im not asking for miracles. Not for her to walk, get better or anything so drastic. Just dont internationally damage yourself further and get upset when you have to be in more pain or play helpless when it suits you to pull on heartstrings so you dont have to go to a home. Im over it. I know, the stroke and early onset dementia play factors in some of the behavior, but why should I keep being treated like a servant or slave bc you didnt and still wont take care of yourself? 2 weeks before she had hee first stroke, a nurse came to see us. Told her if ahe didnt make changes and take her meds this could happen. Take a guess how thst turned out? Im tired.

JessieBelle, Erinm60, I always felt that it was better to be safe than sorry if Mom falls. That lead to a couple of times when one of the EMTs reprimanded me for calling. One time she was laying on the floor after falling on her back and he was just frustrated with me because I called. They took her to the ER anyway. After those experiences I try to use 911 only if there is no other option.

Hi John, I've been lucky so far. She's only fallen once. I got her new shoes after the her fall, rubber soles. If she does fall again or has a medical emergency , I'm definitely going to call 911. I can't see at night while driving. I'd be a nervous wreck driving her if she was really sick and ambulances have a lot of life saving equipment and trained personnel that would be a lot more helpful than I missing an exit because I'm a wreck. But got add ,  my mother is 79 ,  worked and drove up till October of this year. So your situation is so much more serious.   Good luck and God Bless

The fire department is also willing to come help lift them off the floor if you don't need medical help. They've saved me more than once.

Thanks Jazzy2. Good to know

That is good to know Jazzy2! My small town fire department of volunteers would not be happy though!

These days my brother prefers his couch for everything it seems. I notice he is slouching a lot more these days, even in the car. I have to prop him up to sit straight to eat, he will not do the table & chair thing at home. I have to encourage him to sit at the table, turning off the tv, hoping he will focus more on eating. It doesn't always work, he may stand to eat, but I'll take that in lieu of sitting/slouching all day. At his day program he sits round robin, go figure???

We've had no falls, Thank God. If we did, I would have to call 911, I could not pick him up, he doesn't get the "let me help" thing, I'd go down. If he slouches to the floor, the couch is low, he can get up, but it's when he wants to. If 911 ever has to be called, I know that means hospital, everything is starting to be an "ouch" moment, right up with his favorite, "no." Yet he can move fast!

I know a "when" time is coming & I am dreading it for him. I am envisioning an increase or new meds, being in a wheelchair rather than ambulatory, concerned about the experience & knowledge, as well as compassionate staffing. Do we just let these concerns go? How?

The dilemmas of caregivers has no end!

Blessings 🌸

Yesterday was a good day. Mom had a doctor's app't and between the walker and the transport chair it was easy to get Mom inside my car and into the medical building. Nothing is close where I live (rural area) and my Mom and I enjoyed being out.

I just get nervous about Mom's catheter and switching the large Foley bag to the leg bag. Sure enough when we returned home I went to empty the leg bag and parts of it came off! I don't know if my Mom's pants rubbed against it too much or what happened?? It was attached with 2 good Velcro straps. So I just switched it to the large bag.

Today was not a good day. Mom pulled the catheter out and I called the nurse (we have a nurse that comes twice a week). Nurse put in a new catheter and checked out Mom. I am simply not comfortable with her wearing a catheter. I would rather change her "pull-ups" and clean her.

Tomorrow is another doctor app't with a urologist so I am hoping he will say she doesn't need it anymore.

JennaRose What is a transport chair? I'm having increasing difficulty getting my husband in and out if the car.

To answer the original question, sometimes hour by hour , and my mothers still fairly functional. Getting a " needs assessment" done tomorrow for clarification of what I can , she can do. Meaning can I go away for a few days? I already know the answer. No. But. She still bathes , eats, dresses, takes her meds. But she has dementia. On aricept. Looking to get paid help in here so I can get a break. Funny story. The person who was supposed to do assessment today , forgot.

Follow up from needs asseesment. She's not that bad. Thank you God. Nurse said she could definitely be left alone over night. When we go out of town ( planning December get away ) they will come for 2 hours a day. To bring in food , walk dogs , help with anything she might need. She dresses , bathes , takes meds, all with out assistance. She does have dementia but apparently not as badly as I thought. They will call every morning at to make sure she's ok and be here in the afternoon for 2 hours. She does have long term care. I don't think that would cover this , because she does so many ADLs . Regardless. I'm just happy I got good news.

When H is really I'll I have no trouble w catering. But when improving and complaining about everything I find it hard. I try to spend my days at hospital but he wants me to do their job. If I could he wouldn't need to be there. And he is great at "guilting" me into stuff to the point it has become a word we both use in conversations with each other. Then comes the fight that he needs rehab before coming home. I'm past exhaustion!

I'm not doing good today. My mom who I take care of doesn't let me do anything without her. I went to storage today and I told I be back soon and she coming to look for me screaming to me where were u. I feel so depressed she never wants to understand me. She was in car not far from me.

I'm not coping. I took my husband to respite care for 4 days and when I picked him up today, he was comatose and impossible to get out of the car and into the house where he immediately went to bed. He got up from r able it 30 minutes to eat dinner and is back to bed. All my stress came rushing back.

Jazzy, I am so sorry. It is the bad thing about respite. I was going to take a day of respite today, but then my mother fell in the kitchen. I called the EMTs. They had her up and patched in no time. They were wonderful. I still took some time to go out to eat, but I didn't want to leave her alone for very long.

My mother has been getting weaker, so I'm reluctant to leave more than a few minutes at a time. It is making me a nervous wreck. I try to just put it in God's hands, but that is hard to do with my mother, since her needs come often. I am finding myself hoping she passes quietly in her sleep while I still have a thread of sanity.

Heaven help us all

Jazzy, Sorry to hear about your respite, hope your husband will be ok, you as well. You may want to visit his doctor for an evaluation if you don't see a return to his old self. Sometimes it's just a change in the same old that can affect our loved one.

We have to ask ourselves if a respite, or, any outside care is a respite for us? I know I always am concerned, whether it's a facility, day program or even an aide. The combination of this d*** ALZ, my brother's old dominant personality & inexperienced personnel (who always claim otherwise) is not going to make a stress free "Zen" experience for me.

So what is our recourse? If there's not a loving & willing family to share caregiving we have to trust others, yet with caution it seems.

The trials & tribulations & no book or seminar "Tells the Truth & the Whole Truth." We just do the best we can. Blessings 🌸

I am just starting on this journey with my husband's dementia. I agree with NoJoy3 as far as the sadness. But am also experiencing frustration. We have no local support group. I've contacted a couple of local agency's. That got me zippo-zero. I called one of my husband's physicians today requesting he be put on anti-depressives and I guess I said the wrong thing. They told me if he talks about ending his life he needs to go to ER. Well, my husband wouldn't go and if I got him there, he'd walk out. So in essence they said they could do nothing for him. That was frustrating and disheartening. I cope fairly well, although I get so tired of repeating myself. Sometimes I get short with him. But what's worse is when he verbally attacks me. He gets all worked up and then I get worked up and cry. How do you communicate?

My husband has been under the care of hospice for over a year now. The nurse says this is just a progression of the disease and I think she is right as he has been going to this same respite facility for 6 months and used to enjoy it. I think we are just entering into the last stage which I understand can sometimes go in for years. This is the bedridden stage. I don't know how I'm going to cope. He is so heavy and I am so tired.