The worst part is that it never ends.

I understand totally. My mother is 96. She just about completly blind and has dementia. She cannot get to the bathroom on her own and because she sleeps most of the day the nights are really difficult because she is awake. Either she has to go to the bathroom, wants snacks, and makes it impossible to keep her on her medication schedule etc. I am the care giver every weekend until Monday morning.. Sometimes I can get a couple of hours nap during the day. I am exhausted by Monday. I still work part time. So I know how you feel.

Being a caregiver to both parents for over 10 years 24/7, I totally understand what you all are saying.
Looking back, we all seem to get into the cycle of overwhelm, neglecting ourselves, and being totally exhausted.
Need to really take just a little time out several times a day with a 10-15 minute nap (often when our loved one naps)... through meditation, and simpley getting outside on short breaks. Also know that moving the body around can change our "state"... and that in turn changes out mood and ability to cope a little better. You all have taken on an awesome task.

Hi everyone!
I was a caregiver to both parents 24/7 for over 10 years until their deaths... and agree with all of you.
The biggest part is not to get into the "guilt" mode, and do whatever it takes to refrain from depression. We are isolated, feel alone, and like there is no one who understands... ( partially true, as only another caregiver can truly understand)...
Body movement of ANY kind can keep depression at bay... either and actually taking the time to "time out" several times a day. Do any of you meditate, take a "10-20 minute nap". or simple put on some happy music loud and dance around? So many little things can keep us sane. Most of all, ASK FOR HELP! Something I did not do... and can make a HUGE difference

2bluesue, I'm not sure what your faith leads you to do, but the only way to heal and get tired of saying I'm tired is by forgiving them. It does end. It really does. I had a mother who I thought would survive me. She was narcissistic, and a pain in the butt. However, God taught me how to forgive her. I also realized how I loved her. I did not love her as my mother, I loved her as a human being.

In doing that, I could forgive her for being so heartless and put a boundary up that I could live with while still helping a human being. What my mom's behavior also taught me is that now when outsiders from my family call me names or insult me.... it doesn't hurt because my mother had said vile things to me like wishing me dead.

I also have no history from my parents. They kept everything secret. I sometimes pick up things that I've learned, but I have no real connection. The one I did have with my dad's oldest sister, just passed last year also and it has been very lonely for me. But the one thing I can say now that it is all over. I managed to care for both of them. I kept my sanity, and I don't feel guilty for enjoying my life now. Sad as that sounds, its really not. It's freeing. You will find that freedom, HOWEVER, make sure you went to the mountain top each time. Because only then will you know you did all you can despite her and you will have nothing to feel guilty about.

I forgot to add, I really like the "reset" button comment, because that is exactly what dealing with a dementia parent is like. You never move forward, its like a movie on a big loop.

Taking care of a dementia parent is a a little like taking care of a child going in the reverse direction, but much much worse. This is an adult who will snap out of a childish behavior and slam you with an adult response and behavior. You also can't reason with or teach a parent with dementia because they will forget what you said five minutes ago and you will go over and over and over it, and an hour later, over it again, and next week and next month. A child learns and adapts, an adult with dementia goes backwards, but sometimes acts and speaks like an adult. You can't make them do anything they don't want to do.

Dear 2tsnana. I too harbor extreme resentment towards a selfish mother who did not raise me, and I am in therapy to cope with this anger of having to take care of a woman who gave me nothing and very little information about her life. She is in the early stages of dementia. It sucks! I especially get angry that there will be no one to take care of me like I am taking care of my mother. I am so tired of saying I am tired, and to think that this is just the beginning! Good thing is that she is in an assisted living facility in another state, so I don't see her often, and I try not to call. I just take care of her business as her only child with POA and during work days try to slip in calls on her behalf. What keeps me going is my faith, as this is what I am to do as daughter. So keep the faith 2tsnana as I am trying to do, and a BIG HUG from someone who feels your angst and anger.

2 blue Sue.

Dunwoody, Those memories the second time around really made me think about why I was doing it. It came down to one simple fact for me really. I didn't care for my mother just because she was mom. She was a b* to me. I cared for her because she was a human being and I wouldn't do that to any stranger leaving them to struggle like that. So that is how I came to terms with my "demons" of old. It actually became a healing for me but it came from such an unexpected place.

Now I get to learn how to unwind from all the dysfunction now that it is over. It's a little easier to deal with, but I still have certain knee-jerk reactions. When I do, sometimes I visit their grave just to know they really are there and I'm okay to like not having to deal with it anymore.

Many of us survived less than ideal childhoods with parents who perhaps should never have had children. We spent much of our lives moving beyond those memories. And then we find ourselves thrown back into caring for an elderly parent, and what we once thought we "conquered," comes back to haunt us every day we see our parent's face. That's been my experience. What goes around, comes around. I never understood that saying until I found myself living it.

It's been an interesting read here. I think all caregivers on this board can identify with every story, even if the situations aren't exactly the same.

I care for my almost 90 year old mom who has AD. I also care for my physically disabled older brother. We have no family living within 100 miles. And what relatives we do have, never bother with us. Even Mom's brother only calls twice a year...Christmas and Mom's birthday. Why he bothers doing even that, I don't know. He doesn't want to talk to her. He tells me to tell her Merry Christmas or Happy Birthday. I guess he can't come to terms with it all. Even Mom's favourite nephew who I thought adored her, never once called since I left him a message about Mom being diagnosed with AD. She was diagnosed 3 years ago.

A person learns pretty darn quickly who actually cares. And more importantly, you learn how to survive without the people you thought cared.

This is a never ending situation. I knew for many years that I would probably have to look after my brother when my parents were gone. But, I didn't count on taking care of a parent and a sibling.

I can go for hours not hearing the sound of my own voice. My brother suffered a serious head injury years ago. He can barely walk and talk. He can only string about 3 to 5 words together. Often he just says one word and I have to figure out what he's talking about. He suffers from short term memory loss, so will forget something after just a few minutes. Mom can still speak; but she makes no sense whatsoever. It's just a bunch of words thrown together.

The only conversation I have is with people on a message board I've been a member of for several years. I haven't seen or spoken to a real life friend for well over a year.

But, I still manage to survive it all. I plan on surviving for as long as I'm needed here.

vankeurengroup, I am so sorry that you are being treated this way by the so-called professionals. Other than our original primary care physician who didn't know diddly squat about dementia, I have had positive experiences with the health care community. For example, the Mayo Clinic refers to caregivers as Care Partners. At each appointment, while my husband was having tests I was being interviewed. My opinions and observations were sought and taken seriously. At our local clinic his geriatrician talked directly to him but always looked to me for confirmation.

I'm sure it is little consolation to you, but there really are health care professionals out there who welcome and even solicit the input of the care partners. If lack of respect from the professionals is among the worst part of your caregiving situation, it might be worth trying to find the good professionals.

Actually I think the worst part is the lack of support, from family and from the "system", not to mention the health care providers treat you like you don't know what you are talking about when you are the one who knows the patient and their condition best.

Just a comment. I've often heard others say in some situations "If he did that, I'd do this", or "If that happened to me, I'd do that, for sure". "If he screwed around on me, I'd cut his pecker off".

Well, most of us don't know what we would do until we are in that exact same situation.

A year ago, I said if it came down to when I had to change her poopy diapers in bed I'd tell my husband, " I QUIT". Well, I'm even in that exact situation, and I'm doing exactly that, and I didn't quit like I said I would a year ago. I don't know why I didn't quit. Maybe because somebody said "When she looses contol of her bowels, her end is near". Well, her end was supposed to be near "when she started seeing loved ones that had passed on before her". That was two years ago.

I suppose I've just stayed too long now to leave. Maybe cleaning her up isn't as bad as I thought it would be seeing that she is totally helpless now. Karma sure feels great. Everytime I go into her room, I'm pleased she's lonely, stuck in bed and totally dependent on me for everything that happens to her. I have total control over her. I'll even be the one to choose her final clothes to be buried in. I will be nice, though. I need to stay around for that.

I do so appreciate your comment, thank you....at this point my reason for staying in a abusive situation and of dementia, is to disbursement of properties, to free myself of the additional obligations of being caretaker of them as well. And yes I am now in a place with my daughter's help that I have the inititve to search for a care facilitiy near by...at the very least a day care so I can have some respite time. then into a total care facility, which will be extremely difficult as he thinks he is fine. And yes you are right most people do not think I owe anything to him, with the exception of one son.
Another down side of this situation is the fact it is so challenging to keep from becoming disheartened and bitter toward life itself.

trustpact4, long before my husband had dementia I read an article about a woman who had put off divorce until the children were all out on their own. On the day she visited the divorce lawyer she came home to find out her husband was diagnosed with Alzheimer's. She had cared for him 8 years at the time of the article.

I thought at that time, OMG! That must feel like a sentence. To feel obligated to care for someone you do not love and did not want to continue to live with.

My husband had Lewy Body Dementia for more than nine years. He spent all of them in our home, dying in our bedroom holding my hand. It is a huge, huge amount of work and takes an enormous emotional toll. If I could turn the clock back 10 years, knowing what I know now, I would make the same choice.

When my boys were young, if they asked for something that was inconvenient for me, I had a standard answer. "There is only one possible reason I would stop what I am doing, drop everything, and drive you halfway across town to your friend's house!" And they knew the drill and would answer, "Because you love me!" "That's right. Get in the car." (The other acceptable reason would be because I get paid for it. Taxi drivers have one reason, parents have another!)

The only possible reasons I could see for going through what I went through caring for someone with dementia is because you love them and feel loved by them, or it is your chosen profession.

My mother (92, moderate dementia) is sitting in the next room now, watching game shows and folding towels. She was an awesome mother and a fine person. She now has 4 daughters and 1 son taking active part in her care.

Would I do caregiving again for love? Yes. For any other reason? Guilt, obligation, duty? No way, Jose. Uh-uh. Not me.

So when I read about those of you caring first-hand 24/7 for someone who abused you, never valued you, hasn't repented or asked forgiveness but just takes your efforts and emotional turmoil as their due, I'm not sure whether I admire you or think you must be masochists. I'm not there so it is hard to say with certainty, but from where I sit now I say I would not do that. Arrange for their care, yes. Devote my life to personally providing their care, no way.

I don't mean to offend or criticize anyone on this thread. We each make our own decisions out of our life experiences. Just know that if you were abused, not everyone thinks you owe it to the abuser to personally provide hands-on care.

My husband of 50 years, in the last 5 years he has had numerous health issues, high blood pressure, diabetes, heart attack, open heart surgery, mersa, 3 stroke/seizures, terminal stage 4 metastis prostrate cancer and now beginning stages of dimenta, I tried to leave/divorce him twice, because of years of emotional/verbal abuse, and went back to him(god only knows why) I had to close down my business and move because he refused to support me on any level in my endeavors. The attitude was that the people I wanted to help, only were using me. Now I am in a 24/7 care taker situation, with this person, who is still emotionally and verbally abusive,constantly condesending, argumentative, agitative, paranoid that me or someone is stealing his money, disposing of his clothes, people looking in the windows, or breaking into the house...he has always been distrustful of people, and now more so. I had no supportive family where we lived, I had to arrange to sell 2 properties, dispose of all household and other items (he was a hoarder) so my daughter (and one son..the other son isn't on speaking terms with me) arranged for us to move to another state and live with her and her young son. This is a daughter who was also treated as an insignificant, was verbally and emotionaly abused as well by my spouse. now she is taking us in to help me with the situation. (god bless her for this)now in another state, it is up to me to find doctors, prescriptions, health ins. and everything else ....It is sad to say that after all these years, I cannot love this person nor even like him. To say its overwhelming is an understatement, there are times, I feel like just checking out of life myself. If not for my daughter and grandson....

You folks who have given up your lives to take care of a selfish parent have my admiration. My mother was a devoted parent who made many sacrifices for me. When her dementia progressed to a point that she could not longer live alone, I took an early retirement and moved in with her. I am 56 and have been doing this for the past four and one half years. I don’t think that I could give up my life for her had she been self-centered when raising me.

Caregiving is emotionally exhausting work, I’m ok with that, that’s what I signed up for. What I didn’t realize is how painful it is watching the years go by that you will never get back. I try to live day-by-day for my mental health.

Dunwoody, you are so right on all accounts....it is definitely never ending and I totally agree that this has to be the work of Satan! It is extremely difficult and like you, have worked hard at finding ways to give myself breaks in the routine. My mom is now paying one of her granddaughters to come in week mornings for four hours, Monday through Friday, for as long as her money holds out. This gives me time to run errands, work in the yard, socialize, whatever I need to do without feeling harried and worried about mom being by herself. My bible study group now meets at my house every Monday evening so I can be here just in case. My sister takes mom for one week every four to five weeks so I get a break. I am truly blessed in this world of caretakers and believe me I know it. I also know that at any time things could change, mom may not be able or willing to travel to my sister's, in a couple of years she may not have the money available to pay her granddaughter and I will have to come up with another plan...the only constant in life is change. Until things change I just try to be extremely grateful for what I have right now.
Oh...I too have been playing more music around the house....I use one of the online radio stations where you pick what type of music...some is for mom-like the Big Band Era and Mitch Miller stuff....and some is for me! Mom doesn't hear too well, but she seems to enjoy the music when she is near enough to hear it. They say music calms the savage beast....and I'm talking about me! Thank you for your post...it's always good to feel validated!

By the way, mom is turning 88 in two days and she has severe Alzheimer's mixed with Lewy Body dementia, has had numerous hospitalizations for falls, UTIs, and a fractured hip. Has also had three bouts with c. difficile courtesy of the hospital. She is a trooper and I troop along with her.

Hey, I feel your pain. But the thing is I have learned a lot in five years and my mother is the beneficiary of my hard work. I look at what we have achieved together and as a matter of fact there are days when there is actual improvement in her condition as a result of changing things up. Just lately I got her into an adult day program and she will be having some PT there as well. It is a state-funded program and there is no payment for these wonderful services. She loves going and now attends three days a week and takes the transport bus there and home. It gives her something to do with other elders and she cherishes the interaction with the caregivers there who are awesome at their job and really care. If you can get your mom into something like that it will give you a much-needed break from the routine and she will benefit as well. Don't give up -- find new answers for her and for you!

First of all, I was so glad to find this site and to read how so many others are in the same boat as I am. I am sole caregiver for my 78 year old dad who has dementia. His has been a very fast, aggressive type. 6 months ago he was taking care of his personal needs. Now he is in diapers and I have to pay a woman to bathe him once a week. I get NO help from my sister. I'm lucky if she visits for an hour every 3 months or so. I still have to work full time and my husband drives a truck and is away for a week at a time. I sometimes feel like a rat trapped in a cage. I can't go on overnights because no one else will change him and clean him up. I know it will end, when he is gone. I don't want to lose him yet because I lost my mother just 3 years ago. Physically, he is probably healthier than I am. My health is not so good now becasue I'm always tired from working full time then going home to work my other full time job I don't get paid for. I don't resent him. Afterall, he changed my diapers and gave up alot for himself to give me what I wanted growing up. It's just that it would be nice for someone to say, "let me take care of him for a day or 2 and you just rest". He had home health cae for 3 months, and it was wonderful. But because he couldn't make progress, they dropped him. Now I am looking for answers and asking God to lead me as to how to take care of him and myself. I pray for each of you and your situation. This too shall pass, but until then I need a break!

dunwoody, ive read your posts for a while now. you seem very genuine and focused. if it makes you feel better ive had a love / bicker relationship with a woman for three years. as my mom regresses with dementia the woman has backpaddled away from it although i told her i could use her help. im going to continue to fulfill my commitment to my mother and at this point im glad ive learned what this selfish woman was all about.. pretty much herself.. im 54, shes 63. guess which one of us will need the help of another first? i think youll be fine, follow your heart..

People who have never been a caregiver for a loved one who has dementia have absolutely NO CLUE. Many physicians don't get it either. As an aside, a helpful book on the subject is Loving Someone Who Has Dementia, by Pauline Boss. It made me feel a little better.

arlington, it does get so frustrating. People that aren't in the position usually don't understand. If you feel like harming yourself, it is definitely time to take care of yourself and pull back. Other people can take the load for a while.

It does end, but even after death there is a host of paperwork to take care of. I'm discovering the tax end of it can be a nightmare when completely unprepared for it. However, it does end. But I agree with Dunwoody, I need a drink after thinking about it.

Sometimes it just is what is and unbelievably after grief, you will thank God it is over.

Every day I want to put a bullet in my head and leave my sister, who hasn't helped one bit,not one little bit despite desperate pleas, with this mess. The only thing stopping me is the thought of abandoning my poor husband. But even that is losing its pull.

Steve, I love reading your comments because you say what so many of us are thinking, but don't have the guts to say! I have been taking care of my 88 year-old mother who has vascular dementia (from a stroke 8 yrs. ago) since her stroke. She also has diabetes, swallowing problems, speech problems (that's an understatement!) and congestive heart failure. Some days I tell her she's going to outlive me and she gives me an evil little giggle. Most days I think I'm right! I retired early four years ago so that I could take care of her full-time instead of paying someone to do it! My husband is a sweetheart, a big ole teddy bear of a cop, and is willing to watch for me for a few days at a time so I can "get away." He just doesn't get it that that doesn't help at this point -- I still have to come back! Has anyone ever offered watching your mother for a few days so you could "get away" (and make it all better!) and if so did you have a clever answer that I could borrow?
CGDaughter (Marsha)

This story describes my Mother, except that she was living in her own home. When she was finally taken to the hospital, they did a good job. She was there 2 weeks and then, moved to rehabilitation. That was easier than telling her that it was the nursing home.

I don't see how you do it. We had to detach with love. In our case, Mother is much better off with full time care.

Oh yes, so many issues, and I imagine it is even more difficult when caring for a family member, with all the past and present family issues mixed in. I cared for a family member, big time, by taking responsibility for my youngest brother when I was 31 - he was born with brain injury, and had been excused from any responsibility all his life because no one at home realized that he needed extra time, reassurance, re-training and repetition to learn anything at all, so he never learned to pull his weight and had so much to learn. I also asked why does nobody help, why do the ever-changing professionals treat me in a rush when I try so hard, why do they think they need to teach me a lesson if I arrive late for a meeting, after my travelling 5 hours to get there. Caring for him for free, made me feel better about caring for elders for money, for at least I could feel my life was being stabilized by my work efforts. But I have a couple of ideas that I found along the way. I made it my job to pace myself, worked on a schedule that I could handle. Keeping that goal in mind was a priority. Sometimes you have to rush in, but I scheduled 32 hours a week for work, other time, I rested, took time away. One great thing about elder care, is that elders are not running around every minute, they move more slowly and like to take naps - and I learned to nap at the same time, and loved it. And I shifted my perspective, looking for tiny moments where we worked well together on any routine, and when I celebrated those, the fragile person was relieved - it doesn't make sense to only dream of what life will be like AFTER caregiving, for then the issues are also hard, just different: how do I organize myself and my energy to pursue the many interests, how do I share my own gains with others - I have come to see that any shared laughter, encouragement, focused attention, are life values in themselves, and we get them as caregivers. I love the story of the Mom now loving the rock music - sounds like an ammends - of course it doesn't erase pain from earlier years, but it can be seen as an effort to do so, and the efforts of the eldery to add a kindness is a value in this world.

So I learned to focus on doing my best, in any caregiving time - and that meant being real. I avoided energy drains outside of caregiving, and showed up. Sometimes I made myself tired by thinking I was expected to do it all: entertain as well as provide care - I learned that I don't always want to do that, and was thrilled to learned that when I stopped doing it, but stayed with the person, in silence, doing nothing - to my surprise, after a while, they spoke more gently, glad to have time with someone who was not trying fix everything, at every moment, but was willing to be there, present and open. One time, with my 106 year old lady who was declining, I was too tired to "chat" as she often liked, and sitting near her, I put my head down on the arm of her chair, and stayed there without saying a word. I was really tired. After 3-4 minutes, I felt her hand, patting the back of my head. She was not a demonstrative woman, but she recognized my state of being, and responded. When she dies, likely soon, it is a memory I treasure. So, I found it worked for me to consider caregiving a lifestyle, pay attention to my energy and make finding balance a priority, for I don't think anyone really feels good if they feel that someone is helping them and resenting it - yes in moments, but we are the ones who know what we need, and have to find ways to add more of that, and rest, and find relationship of new kinds, in the care. Easier to say, sorry, I mean no criticizm. I understand the resentments, for family issues bring up many. But considering that others in family wish at times they could help us, but we are all stuck in old patterns... it's hard to help ourselves, as I'm finding now with caregiving less.

Funnierthan me, Look up Wellness Briefs online. They are inexpensive and keep Mom dry overnight, whereas every other product I tried left her wet up to her head!!! I was so tired of all the laundry! I bought washable bed pads, the bigger the better. Theses diapers along with an incontinence pad, largest and most absorbent you can get, as a extra precaution, should keep her and the bed dry. Now I only need to wash the sheets to refresh them. You have to buy them online, but they are on sale often and have free shipping a lot too!
As for Mil's diarrhea, how about celiac disease? It's very common in elderly people. Try giving her gluten free foods, nothing with wheat, and see if she gets better.
And yes, everyone is right, it NEVER ends, so try to make the best of it and play the piano, or knit like I do, or just stick your head out of a window and breathe in the fresh air! Try to do something for yourself to get away from the stress even for a tiny bit!