I'm burning out

No, no respite care yet. My husband can shower and shave and use the bathroom and feed himself, but he can't take care of his meds or get s meal for himself. He can't keep track of appointments or follow directions. When we have an appointment at 11am, he wants to get up at 6 and leave at 8 to get someplace that is 15 minutes from the house. He insists on driving, too. I have talked to the doctor about the driving, but so far nothing has been done to stop him. Our original neurologist did tell my husband to take a break from driving and let me drive, but my husband forgot that 2 minutes after the doctor told him, just like everything else he is told. He does not recognize...or chooses not to recognize...that he has a problem whether it's Alzheimer's, Dementia with Lewy Bodies or Parkinson's Dementia. He is a very proud man and anything that might be a sign of weakness is taboo. He gets mad when I cry because I am being weak. This is not new, but when he was "normal", I could at least explain things to him. Now he can't or won't comprehend. It's hard to tell, because sometimes he acts so "normal" then the next minute he is "out of it". I know this is just the tip of the iceberg, and there is far more and far worse to come. That is what scares me so much. I can't handle it as it is; what am I going to do as he continues to deteriorate? I have told friends and family for a year that I am not cut out to be a caregiver. It's not that I'm mean or don't care. I just don't have the mental/emotional/psychological strength to deal with this. At times, I just want to run away. Other times I just want to die. I know I'll never see my daughter or grandchildren again because I can't leave my husband to travel nor can I afford it. They can't come here because my husband can't handle the grandchildren. He thinks they should just sit quietly all day. Now, you tell me how many children under the age of 5 are going to do that?? None that I know of. Besides, he and my daughter don't get along. They used to, but when she did come for a visit one time with her first child, my husband was picking on everything my grandson did. He was 2...what did he expect of this child? My daughter was VERY upset and really told him off for which I don't blame her. My husband has always believed there are only 2 ways of doing things: his way and the wrong way. I have fought him tooth and nail on many things over the years, and he gave in or put up with it. Now, that isn't going to happen. You cannot reason with him. You can't explain anything to him. Today is the 3rd day he hasn't showered. I cannot get him to, either. He has a doctor appointment today and we are supposed to go to a luncheon for a 93-yr old friend of ours. I don't even want to go. I'm embarrassed by my husband's appearance. If I hadn't taken the shirt he's worn for the last 4 days and put it in the laundry, he was going to wear it again. I am so unhappy right now, I just want to run away and never come back. I have no where to go, no money, no job, no hope...even prayer isn't helping. I wish I had never married this man. Sorry to say it, but it's true. I just don't want to deal with this. I just don't. I know I sound heartless, but I am just so tired, and this is just the beginning. What's going to happen when he can't shower, shave, use the toilet, dress himself? I just can't see me doing this...Thanks for letting me vent. I need to get this off my chest.

Wordwoman, I am convinced that our primary obligation is with us, because if we fail, all are down. After that, in your casew, I would choose the children, and at the end your mother. What I mean isnot to abandone, but to styablish priorities. The way of being mean since earlyin life usually gets worst with age, and specially in our cases.
I woudnt be worry about sensibility, because our dear ones (and the no so dear) are or will be beyond that point, and the waste is for us.Sort of like the doctors, nurses, etc.
Best luck and lots of hugs, we should allways count on us

Scared, Just know you are not alone. We are all scared at times. Mostly we are tired, but it occasionally slips into scared. Come here. The people on this site are here for you. I have been amazed at the people who continue to come here even after their journey (looking for a better word) has ended. As they were when their loved one(s) were living, they are still caregivers. It is just that now they care for us who are still on that journey.
Bring your struggles, tears, worries, good days and bad to this site. Some of the most wonderful people reside here. Because no one person in the world has all of the answers, having many people to bounce issues off of gives us all a larger view of possible solutions. Remeber there are people who care. While they not be there to physically help you, they can relieve the mental burden.
Please look into respite care, take care of yourself and perhaps watch a funny movie. Laughter is a great stress reliever.

{{{Scared}}} We are here for you. Have you been able to get some respite help so you can take time away for yourself?

Take care.

You all sound far stronger than I. My journey is just beginning and already I'm ready to throw in the towel. I just don't know how I am going to be able to cope...today is just one of those days when I just can't seem to find the strength to face this horror. I am trying so hard to stay positive, pray and believe in myself, but today I just can't seem to muster up the courage to face it. The feeling will pass, but until it does, I just feel empty, alone and totally terrified! Thx for letting me vent. I need to let it go and let God!

I feel stronger just reading your comments. i have some advantages and some disadvantages. but in the end, its really about doing what i feel its the right and morale and kind thing. its about doing unto others.... but like Wordwoman, i had a stepmother who was mean, pure mean, and i know i would have had the strength to NOT turn the other cheek. at least dad isnt nasty to me. hes almost like a little kids who looks relieved when he sees me.

do you have time for me? he says....
(gulp. guilt)

JessieBelle, I missed the train comment. That is a better idea.
I retired 8 1/2 years ago on disability. I have now steadily gone down healthwise. Meanwhile my husband and parents have gone downhill and it has been decided that I am the one well enough to take care of everyone. There are weeks that I think I can't take another step. The past 2 weeks have gone that way. My only help is an out of state sister with a husband whose health is also bad. She has a couple more years to work, but helps out as much as she can. She keeps asking what would we do if you had not retired. I just keep thinking what will we do when I collapse.
Thank y'all for being here. You bring levity to my life. Bless you all.

I think we are going to have to get us a bus.

I tried to care for my mother (now 95 and still in excellent health) when her dementia became obvious, but I'm the target for all her hateful disappointment and scorn. Anything I did for her to help her, she perceived as something I was doing to her to hurt her. My health was spiraling downhill - she was too hostile for me to live with her - she hits me in addition to the filthy names she calls me on a regular basis. A few months ago I moved out of state to be near my children. There's not room for the whole nightmare here, but I don't even take her calls anymore. i spent about three months unable to eat or sleep or stop crying or hyperventilating, but I'm getting better. I thought it was my duty to take care of this woman who never showed me any genuine love in my entire life, but I realize now I don't have that duty, I might burn in hell, but it was her or me and I chose to save myself. Good luck - take care of yourself.

Thank yu Jeanne, was an excelent advise, wish you luck now, Now you may be able to see the journey that some of us are just benniing to go .
Deriving from your words, seems like you are a vey strong person, and now ready to run a diferent area.
Good luck and many hugs to you

daughterlinda, you have received some excellent advice. I just want to share a couple of points from my perspective. My caregiving journey was 9.5 years, for my husband who developed dementia after we'd been married 30 years. Now my 92-yo mother has dementia and I participate in her care. (One of my sisters is primary cg.) I know that there are many differences between caring for a spouse and caring for a parent, and between someone who has dementia and someone who is of sound mind. But these two point are probably fairly universal.

1) The role reversal is a huge challenge. My husband and I had a relationship based on equality. We shared child raising and income-earning and cooking and financial decisions. (We hired housecleaning.) Now, suddenly he is not my equal partner but a dependent. OMG. That is huge, huge, huge, and it isn't always acknowledged by the health care profession or the experts who write articles. Similarly, our parents gave us instructions and protected us (whether we wanted them to or not!) and made decisions in our best interest. Even if as adults we let this go in one ear and out the other we generally let them have their say. Dad may have been the one who decided when you were allowed to learn to drive, and now you need to make sure he does not drive. (And you really and truly do need to do that.) It is a HUGE role reversal. Recognize that. Cut yourself some slack for feeling cowardly about it. But act in his best interest regardless.
2) Being thrust in a new role not of our choosing is scary. Early on my journey I agreed to fill out some surveys about caregiving. Several questions we along the lines of "On a scale of 1 to 5, how strongly to you agree with this statement: I am more confident and self-assured since I started caring for my loved one." And I remember thinking "Are you nuts/!!" I was a well-respected and established professional. I knew how to do my job and I did it well. I had a successful marriage. My children and my stepchildren liked each other and liked us. I had friends. I had a hobby I was good at. I had a life. And now I am doing tasks I have had no training for, and I often feel totally inept. This is probably the most important thing I have ever done, and some days I don't have a clue what I am doing. How much do I feel more confident and self-assured? Why isn't there a 0 on this scale?

I will say that by the end of journey I did feel more confident. I mostly was a good caregiver, in spite of all the obstacles. And if I can do that, what can possibly come at me that I can't handle? But the first year or two? No way was that good for my self assurance.

One of the things I came to accept was that perfection is not possible -- and not necessary.

Caregiving is never easy. But it can be very rewarding, if the pitfalls don't get you first!

I find interesting that our hole for the husband/wife-with-mental-problems fall again into the My-mom/dad-has mental-problems´s hole.
The situation does´nt change, our lifes are in jeopardy, and most of us are wasted futurless, at least for some or many years to come. And full of uncertainty. Must of us don´nt know what will happen this afternoon,, not a dream of thinking in afair future.
In many cultures to take care of elders was, and is, considered a social group chore. The wife/husband problem is sort of new. A recent fenomenae, that our society still does not know how to dial with

It sounds like we're going to need a train. We'll probably need to make sure that the bar is stocked.

I'm right there with you. My Dad daily wants my hubby and I for entertainment. I like the Thelma and Louise thing! Is there room in the car for me?

Can I come along? :-) Sometimes I just want to go away and not look back, too. That's OK. We deserve to feel anger, frustration, guilt. We just have to prevent it from eating us alive! Venting here is such a great way to move on when the road gets rough!

In response to: I just want to get in a car and drive away.

Just make sure you haved a full tank of gas.


Just a little levity here. Chuckle. Chuckle. :-) W

I know how you feel, my mother is 92 and I am the only person she wants around her. Some days you wish you could just put the burden down for just a little while. Is your dad a military vet? Maybe the local veteran's center has some ideas. Someplace for him to meet up with veterans that he can talk about the good old days with. I bet some would even go to his house if he can't go to them. Just a thought.

Am dealing with a mother with dementia and a husband who's an alcoholic. Without meaning to sound like "poor me" I gotta say - some days there seems little point in getting out of bed.

Notwellmyself: I'd like to come. I'm just about at my end - at least today. I know it has to go on, but right now, I am just so overwhelmed with anger, sadness, depression. . I see my life passing before my eyes and there is absolutely nothing I can do about it. My mother is living with us now because the family cannot afford 24 hr. care. My mother has dementia, needs help with every aspect of living, and my husband and I are retired and it's presumed we have the time to deal with this. We do - unfortunately, we waited our entire lives to be able to enjoy this time and now we can't. It's not only the drain on our time and emotional well being (the stress is causing serious strain in our marriage) it's the drain on our finances. The anger intermingled with all the rest of it is sometimes too much too deal with. If only somebody had stressed the importance early on of having long term care insurance. After a lifetime of paying for insurance up the whazoo, none of it helps now. But I must keep calm. Getting excited only exacerbates my mother's dementia and when the rage phase kicks in, well, it really is too much to deal with. So I stuff it inside, and some days I'm ready to blow and have to take some time out and get away - me to my computer and this site.
My favorite movie theme is Thelma and Louise. There are days I want to get in my little car and just drive away from all of it. Hopingforsomesleep.

I'm running away to Costa Rica & not leaving a forwarding address. Want to come? If we got enough of us, we could organize that group primal scream several of us talked about a while back.
I'm just joking, of course, but some days I'm more serious than others. My dear, sweet sister called me the other day to tell me that Mama had called her and said I was stressed and she did not think I had a reason to be. My sister started listing the reasons. At least 1 person understands.
Get those keys out of your father's hands. Think about having to live with the guilt if something happened & he hurt/killed himself or others. That will give you the spark to either get his doctor to get his driver's license revoked or for you to anonymously contact the state driver's license bureau to get them to revoke it. If he could not drive, maybe he would see the need for someone to help him out.
Good luck. Take care of and time for yourself.

What takes you away from devoting your time to caring for your father is the fact that you're married, a situation which I am not in. Maybe you can get Home Health care for your dad. My parents are 84 and 81. I always say, jokingly, that once they reach 90 either they will be dead or I will. LOL :-) You need to have a thick skin and a sense of humor in this game. If you have kids, which I don't, that makes it even more difficult for you to provide caregiving. Plus you have a job. Your hands are pretty much tied with other activities. Since I'm a single, stay at home "mom" I can focus all my energies on caregiving. You can look into Home Health Care, Nursing Home, Assisted Living and see which is the best fit for you, depending on your financial situation. Always remember, in this game, you're never alone. Hugs. :-) Wayne

it feels good just knowing im not alone......i knew it...i just never knew where to find you!

I'm burnt out too Haven't had a vacation in a long time I'm going to Cuba next month for 9 days A well deserved rest Maybe you should take a vaction too and contact Home Health care services so someone can stay with your elder while you're away Thankfully I can cook and clean pretty well as well as running all the errands. Maybe you can eventually turn into the domestic goddess that you were meant to be Best of luck to you Hugs :-) Wayne

All of these suggestions are valid and good. Even though my husband is only in the beginning stages of dementia, his behavior (auditory hallucinations, paranoia) have already brought on anxiety attacks for me. We found a new neurologist who is doing a lot of testing and we have gone to the VA for help. (If your Mom or Dad is a vet, your Mom may be eligible for some help from the VA.) I feel better now and at least get more than 2 or 3 hours of sleep a night. I know my situation is only going to get worse, and that terrifies me, but I believe I am taking the right steps to get whatever help I can when I need it. My husband also wants me around 24/7. However, I am 17 years younger than he is and I need to be working, but I haven't been able to find a job since we moved to a new state 10 months ago. I need health insurance, but he doesn't understand our financial status any longer. I thought when we were planning this move his disconnect from the whole financial and insurance issues was just his normal selfishness, now I know it was this disease that has suddenly and dramatically become worse. Don't get me wrong, I knew a long time ago my husband was self-centered, etc., but it was OK, because I could at least talk to him and make him understand my point of view, the reality of the situation. That is no longer the case. It's probably a good thing that I didn't get a job yet because I would have had to quit to deal with what has been happening since Christmas Day, 2012. We have no family or friends here so I am the only one who can do this right now. That is why I am getting the tests, finding out what's available and working to get whatever help I can. There is a lot out there, but you have to seek it out. It won't come to you, but with the right guidance...which you will find here and at sites like the Alzheimer's Assoc, LBDA, Area Agency on Aging...you will be able to get the help you need. Don't give up...fight the good fight...it's for a great cause: YOUR health and well-being as well as your Mom's and your marriage! Hang in there! You are NOT alone!

I started going over on a regular basis and taking my mother out every Saturday for the day hoping she would give up her liscense and sure enough she did. She knew she could count on me and soon waited knowing I was coming. If he can drive then use his car to drive him around. I worked fulltime and had children and a husband and fortunately they understood. I agree getting a warm and caring person to get friendly with him can wean him into a great relationship for him and he will look forward to her/him when you arent around. Daycares will usually pick them up and bring them out for the day and give them meals, they can play cards, etc there also but I had to go with my Mom several times until she felt comfortable there, a 3 month weaning process. Getting him to know someone will be the best thing for him and maybe you can find that special person. I find caregivers on care (dot)com on line and read their background checks, you have to shuffle through many to find a good one for sure. If letting him know where you are gives him comfort, why is that an issue. if you were in his shoes you would want that feeling of comfort also. Talk to your husband about being supportive, after all , your poor Dad is 90 and he doesnt live with you does he? My Moms been with us now for 5 years and is completely unable to walk or talk and is incontinent, my husband did the same for his parent years ago and understands. Hope you find a nice person soon, male or female to slowly become friendly with him. We will all be in the same boat some day and we get what we give. Best of luck.

Dear Linda - Understand how you feel. My 91 yr. old mother has vascular dementia - and at times that creates a paranoia and mistrust which results in her wanting only me around. Prior to living with me, my mother lived at her own home with caregivers 5 hours a day, spaced throughout the day so she was never alone for very long. But just after New Year's, on a very cold day, my mother wandered out into the street in her nightdress and slippers before the early morning caregiver arrived. Police and social services were called and she was ordered to have 24 hr. supervision. It is quite an experience to have to provide something that one can't afford and receive very little help or information beyond more numbers to call. So as I continue the search for a solution, my mother lives with me and while I love her very much, it can be a frustrating experience. Do not feel that anger, frustration and exasperation are any indication you do not care for your father - above all do NOT feel guilty if such feelings arise. Caring for an elderly parent is an instant lifechanger that you have no choice but to deal with - and on top of all one's other responsibilities, it is no wonder we get burnt out and feel angry at times.
Until I learned to take some time out for myself - no matter what - it was just exhausting getting up every morning (especially after being up during the night hearing her wandering) only to hear my name called almost instantly upon her awakening and then constantly throughout the day as she seemed to need me for the simplest things. Or just wanted me around because it made her feel safe. And I started to burn out fast. And, worse, I started to resent her, feeling she was in this mess because of bad decisions she'd made and now I was stuck with dealing with it. I recognized I was feeling this way because I was tired.

I did several things. 1. Her doctor is your friend. He informed my mother she couldn't drive. No quarrel there. And he also advised her she needed 24 hr. care. 2. Any difficulties with my mother resisting the idea of 24 hr. care or the need for supervision, I explain it is not me who is "foisting" these things on her, but now a requirement by social services if she wants to remain outside an institution. That once they were called in, it is no longer a choice.
She now understands this. 3. When toileting accidents during the night were resulting in a trail of puddles staining once gorgeous pine floors (hate to sound petty, but I'm trying to sell my house so have to keep spotless and in good condition, and the wear and tear the wanderings and the rest put on the house are astounding.) I bought Depends Maxi and she wears these constantly now and that solved that. 4. To get some needed sleep during the night, I've made the house safe to wander, removing area rugs and pushing furniture to one side
and, most importantly, turned off the circuit breakers for the stove and microwave. She can't get out because I have always had special locks that require a key.
I now get sleep and I'm better able to tackle what lies ahead. But it's a situation that can't remain as it is and I continue to look for help. In my situation it's a live in caregiver, someone who needs a place to live - and there are many in my mother's neighborhood after all the natural disasters - and I will put in safeguards in her home like changing the locks to keyed ones and putting safety switches on the stove - or at least doing something as simple as making sure she has a tea kettle with a loud whistle and that it is FULL of water before going to bed so she won't burn the house down. It is a challenging and difficult time. But at the worst of times, I remember she was always there for me. Always. Never a question about it. She is 91. If nothing else, nature will see there is an end to this situation at some point. In the meantime, the trick is to do what we can to make our parents' end of time less frightening while still holding onto our sanity...and our love for them. I sometimes look at my mother, now so frail and until I fix her hair - sometimes like a wandering bag lady - and my heart breaks for her. Just breaks. How cruel life sometimes seems. My best wishes to you. You're doing a wonderful thing helping. Take care, Hopingforsleep.

Daughterlinda, I agree with Gonzalez38! There are so many good suggestions I won't add to the list. Just here to encourage you to keep coming back and typing in your update, status, new questions, suggestions for others. Being on this site has helped me vent and get great suggestions. Although I didn't take all the suggestions, very often there were suggestions for me that were completely priceless.

While caring for my mom I had no idea how long it would go on. I hoped it would go on for a long time, but it was also wearing me out. If I did not take good care of my relationship with my sweetheart I would be the one alone right now. I am very thankful that I'm not.

Please make your husband your priority. In the long run, he will be with you for many more years to come, long after your Dad moves on.

Dear dauighterlinda, when I first read your message, I began to answer, but after reading all those marvelous, real and sincere messages, I believe my iddeas similar ad not better.
Please don´t feel alone, we all are in the same boat. If we sunk, our dear ones will be in worst situation. Take care of yourself
Lots of hugs and virtual support

Hi Linda,
My first piece of advice is take care of yourself and your marriage first. You cannot get down physically or everything starts spinning out of control. The added stress of marital issues are not good for you. My mother lives with me and my husband. I did not handle the stress well at first and ended up with kidney stones/surgery and a 3 month recovery period where my brother had to come from out of town and take Mom back with him. It was during that time friends stepped in and gave me some stern advice. Somehow as daughters we lose our voice around our parents. I'm not talking of rudeness, but Mom lives in my and I am married. I am here to help her and have become the parent. So even though you do not have children, it's time to deal with your father as if he is your child. I would do all I could to obtain POA over his medical. Now you can talk directly to your father's dr. Before I had POA of Mom's medical and before she moved in with me, I went with her to her dr and was able to speak with him privately in the hall. He went into the room and told Mom she could no longer drive. There as an exchange of words, but he was very stern with her with the fact she could kill or injure innocent parties by her inability to drive safely anymore. That was that. While I was recouping from surgery I also had a friend call me about her neighborhood Facebook page and she posted for me that I needed assistance with my Mom. This amazing woman called me who is a senior's advocate and I unloaded on her. She has helped me find agencies and get assistance. It's lonely out there for the children of the parents who need us, Linda. But, I want to encourage you in these 3 areas. 1. Take care of YOU and your marriage. 2. Talk with your father's dr. 3. Get the word out that you need help. You cannot do this on your own! I'll be praying for you, Linda.

Dear Linda,
I am in a very similar position, though I know longer work. My father is 77, going on 107 due to all of his illnesses. We!
took the keys away when most of his Rx's said, do not drive while taking this medication. As his DPOA, if I allowed him to drive, I could be held legally responsible !
As far as hiring outside help, we'd love to be able to, but can't afford it.
My father goes to a senior center activity center every day and that does help some what.
Wishing you the best of luck and understanding that you definitely are not alone.
Suzanne