I can't tell you how right on this article is for me right now. I have been caring for my parents at various levels for the last four years. My dad recently had a fall and hit his head resulting in a brain bleed and some mental confusion and worsening sundowning. I made a decision on a care home and they have been there for a week now but I am having a hard time with regretting that decision. I had another choice which would have been in another town but would have been a different type of care with me having less involvement which I am thinking would be much better for my own mental state. Everyone else in the family is ok with the decision that has been made, but I am having a hard time moving on from this place of regret. Thanks for writing about this. I know I need to just move forward with where we are, it's just hard.

Carol, as always you are so right. I often find myself looking back with regret during my caregiving journeys then have to stop to remind myself that I did the best I could. This usually happens when looking through old photos then I become emotional with regrets. But I will always be grateful for the time with my parents, in-laws and friends. Thank you for being there for past, present and future caregivers. You are appreciated and loved.

Thank you for this article.

My husband was diagnosed with with early onset Parkinson’s Disease at the age of 40. He passed at age 64. I worked full time and had caregivers at my home during the day. The last 10 years until he passed, he not only had motor problems, but also significant mental problems. His hallucinations, delusions and paranoia were the most difficult for me. There was a point in our relationship when my husband, best friend, partner, lover, and advisor slowly became “ not really him”. I started to mourn the loss of my marriage while still caring for all his daily needs. I had to withdraw emotionally but still care for him with empathy. The best advice I received was from a counselor that gave me “permission” to make the switch. She helped me understand that he wasn’t the same person anymore.
He has been gone for 3 years, and I still feel so sad for what he missed and what could have been. But I know in my heart that I did the very best I could in an extremely difficult situation. Tomorrow would have been our 42nd anniversary.

In hindsight I would have ignored the negative input and discrediting of my concerns from siblings who contribute very little. They constantly point out how WELL Dad is doing for his age, whenever I try to explain how significantly he is declining. They see him *maybe* once a month for a few hours and during that time he is clean, fed and sitting in his chair. So they see basically 1% of my reality. I honestly thought I was losing my mind but found a therapist who is helping me process. I don't think I will have too many regrets. I've given up everything except my remote job and that may be next. I live with Dad, and cherish the time with him. It's also living hell at times. I'm learning that both things can be true simultaneously. I just need to go easier on myself and drown out the "voices" from those who apparently think they could do a better job or think they could handle the burden with more grace.

Don't move a truckload of household mess 1800 miles because she won't need it.
Mom needed a tenth of the clothes & shoes she wanted to hang on to.
99% of what "had" to be moved has been donated already.

I would have gotten POA ten years ago.

What I wish I could do different wasn't possible then and wouldn't be if I could go back in time. Mom had mental illness everyone ignored. Then dementia. She would fight off help tooth & nail, literally. She was mean, weird, and smelly, so everybody in the community left her well alone.

She should have been under care at a senior residence of some sort ten or more years ago. We all let it get too bad, but I in particular was pushed the farthest away, so I don't know how it would have been possible to force changes on her back then.

She should have had a longterm care insurance policy 20 years ago. She had one and cancelled it, losing the money paid in.

Or maybe I should have moved even farther away and never left a forwarding address!

The things that don't make any sense and frustrate you, that is the area that person needs help in-not condemnation. When you are gentle, soft spoken, understanding, and overall a pleasant person, the one in need will remember your kindness.

I wish I had known how much she could go down hill so quickly. I wish I had known how hard it was to find a medicaid nursing home that was a good one. To everyone out there, if you think you are going to need Medicaid, start planning now, go and apply as soon as possible. Put your parents' name on the list at the homes. Check out the homes, go and visit them at all hours of the day and night. Check them out on the medicare site and the State site, to see their ratings. Do it early and get all your paperwork ready and in order. Social Workers want everything for a couple of years.
Ok, on the practicle side, a couple of things I wish I had thought of sooner, were
1- if you are giving them a bath, put the shampoo and conditioner in the water so they can warm up and won't be cold when you use them ....
2- If you can, put some towels in the dryer to warm them up while you are giving them the bath, so that the towels are warm, when they get out. My Mom was always cold when she got out.....

I wish I had spent more time, doing things with her, like getting her to do puzzles or other things. AT home, all she wanted to do , was sleep. Now that she is in the nursing home, she goes and goes and goes, day and nite. I now take puzzles into her and she does them. We are down to children's books, but that's ok. Some days she reads them to me and other days, I read to her. I am still looking for other ideas for manipulation. She gets bored, even there.

What a wonderful article. Thank you.

its hard to give tips because everybodys situation is so different, some are still 'with it', others are far gone.us caregivers have to get strong real quick, you probably wont get help from family. funny how your loving sister goes ghost on you ( go ghost=disappears) when asked to help.
get creative, learn to predict what may happen then prevent it. this takes a whole lot of energy though, im learning that.
but sometimes no matter what you do your gonna get yelled at by somebody, you got to learn to shrug that off. i think thats the hardest thing for me.

I see that I'm not the only one that notice that the one we are taking care of on a 24/7 daily basis can be mean to us but a totally different sweet person toward other people or relatives. My 80 yr old mnl was diagnoise with mild Alzheimers about 5-6 months ago. However, I notice a lot of changes in her about a year before her diagnosed. I had my husband-his Mom to get checked for she was hiding medicine, wearing same clothes for weeks, and the house was a mess and she was never like this before. Well, she only has Medicare so she is living with us and I stay home with her 24/7 to make sure she takes her meds and eat and what ever else she may need assistant. I don't mind helping but she has always been so negative and this just makes me feel like crap. I can't get her to go anywhere unless its the dr visit. she complains she don't feel good, she say's we don't know how she feels, she won't get out and walk, she don't read so all she does is sat on her rear and watch tv. However, she tells her dr that she gets out and does this n that and I finally had to say something. I inform the dr that she don't do all that stuff and you should had seen the evil look I got. Then she tells him that Im trying to put her away. Like, r u kidding me! If that was case u wouldn't be living in our house. The dr. did say she could walk every other day a half-a-block until she feels she can walk more. That was fair but she never feels like it when we get home. My husband-his mom, he practically has to make her go out n walk and she is pretty healthy for her age. Then she tells everyone she is being made to walk. So we look like the bad people. However, once she is out you can tell she feels a lot better eventhough she complains the whole walk. I try to get her to notice the birds signing or the pretty sky and she just shoots that right down. How do you get mnl to do any thing to help make the days not be sooooooooooo long. I ask if she like to help vaccum and she replies its not her house. But, when hubby is home she tells him she don't mind helping around the house. Her new thing now is when she is mad about something that we asked her to drink more water instead of more cola for she has had two bladder infections already. She starts whispering cuss words and it just drives me nuts and I think she know it too. Hubby said it don't bother him. Of course, he is not around her 24/7 either. I am not in best health myself. I have diabetes type 1 over 30 years and Lupus sle and had a kidney transplant going on 10 yrs in June. Yeah... I feel like I'm in a prison in my own house sometimes. Then, I feel guilty for feeling that way for my mnl for she has lost her indepence living in her own home. She only has Medicare so my husband and I checked out a place that watches Alzheimer's clients and we did bring her with us too. She complained that she couldn't be locked up where she cant get out and we told her it just for a few hours. She was not having it and that was going cost us 10 bucks an hour to just for me get a few hours break. She has no family relatives that will help except the one that took advantage of her and took all her savings about 30 G's. That's a whole new story. Sorry for so long. but it nice to be able to get tips and see that Im not the only one out here with similar situations. It be nice if their were books that could help. I hope this webpage has information to help. Because it seems I have a long way to go and I'm just getting feet wet. Lord help me..

My mom passed away on Oct. 31 in Hospice. I thought I was ready and would not grieve, but I am grieving. It was a 6 year journey taking care of mom.
I never thought of taking off different meds like I read in one of the post.
Under hospice they took her off some of her meds, and even though she was in so much pain, her mind became a little more clearer. When she got UTI's she was "crazy". This site helped me so much over the past few years. Thank you!

Lynstudio, my thoughts are with you both now. Hospice workers truly are extraordinary souls, and I am glad they were able to care for your Mom (and you) now. Sending a hug, Jane

Just wanted to thank everyone for their support and encouraging words throughout my Mom's illness. Last week she passed peacefully at a wonderful Hospice facility. The people caring for her there were amazing. To all the caregivers out there, remember how special and amazing you are. Good luck and God's blessings to you all!

I contacted hospice for dad the week he passed. Their appt was for Monday morning, he passed Sunday morning, the day before . I'm sad for that but happy he wasn't tortured anymore. Thanks everyone.

My Mom was taken to the Hospice facility last week. I'm so grateful! The place is beautiful and the people that work there are amazing. The nurse came to evaluate her and determined this was best. She will end her days there in peace and comfort. Now it's just the waiting that is becomIng stressful. She us still strong but there will be no recovery.
I also wish I had learned about the dementia sooner. Thank you to everyone for sharing, it really helps.

Hugs to all... came here just to read, for advice, and ideas. My mom is 82, still lives at home but I don't know for how much longer. Going through second UTI, and I have to go there to make sure she takes her Cipro. The other meds were put in a four-time a day pill box to make it easier for her, but she still does not take all of them (maintenance drugs). Started the Cipro on Friday, two times a day, and she already took an extra one Saturday night. Tonight she was very mean vocally, physically restrained me from leaving. I should mentioned that she is also bipolar, etc., and has been like this all her life ... add dementia to that! I mentioned to her several times about going to two daytime places for socialization (one adult day center, the other just casual association), but she refuses - happy to stay home. From what I can tell, she is early onset dementia to possible stage 4.... it bounces back and forth. I take care of all her bills, while looking for a part-time job .... hang in there, take one day at a time. I have to call her doctor on Tuesday with an update of her condition. She stated she will be calling him tomorrow..... I said go ahead. I am exhausted.

I meant twice a MONTH on the carpet guy! LOL.

I'm early in this caregiving in my home thing. I didn't predict the vast number of changes that would happen to our routines, and to the physical house itself, to enable things to run more safely and smoothly here. We actually thought Dad would move in temporarily and then go on to a continuing care facility -- we live many hours from his former home, and knew he couldn't stay on his own. We thought a few weeks, and then he would choose and move into a great place. Then we learned his money was largely gone, and this is his living option until he is too fragile for us to handle at home. Things like pulling up rugs, even if you like them...installing grab bars, even when they look awful...getting the stair climber chair installed, even when it makes it harder for us to squeeze up the stairs with a full load of laundry...putting objects he would use out on the counter instead of in a cupboard because his shoulder function is so poor...moving furniture so the rolling walker can navigate without taking out anything...overlooking divots in the walls where the cane bangs it and blood on the carpet because his skin is so thin it tears easily...getting the carpet guy to come twice a week to clean out the urine smell...we didn't see any of this coming. I wish I'd had a week to prepare and get things more set up, because maybe it would have been less stressful for him and my "real" family at home.

dad was in a hospital when the dementia was full blast. know that it was the disease, not him. I tried to feed him because he refused food and water for two weeks. He spit it at my face. Know that it was not him, but the disease. It was the first proactive thing he had done in months. He wanted to be free of this life I supported it. The DNR supported it. He passed a week later in the nursing home. He was free. I was free too. Remember the good times folks.

I'm having issues facing my reality. My 98 year old Mom had become stubborn and combative. Would not even accept a Tylenol for pain. I had to call the Paramedics and even innthe ER she slapped me away and said horrid things. She has a bladder infection and was dehydrated. Within 20 minutes the iv fluids had brought back the normal person. She was much better but the hospital discharged her because her ailment only allowed for one night. We got through the am and tonight she is nasty again. I'm frustrated and upset. How could they send her home only to have a rebound. We family caregivers have it rough because the patient has the ability to emotionally hurt us. My Mom is never this mean to outsiders. It's bad enough to see them deteriorate but to be abused in the process is awful. I think EVERYONE here is doing a great job simply by stepping up. When I read your words I don't feel as bad anymore.
Thank you, fellow caregivers..... You are exceptional people

If I could do it over I wouldve learned about dementia sooner. I wouldve taken dad out of assisted living where we both were tortured for his behavior. I wouldve fired his psychiatrist for over medicating him, so he was confused and falling down constantly. I have no regrets about the last days of his life. I saw him and looked at family photos. He knew who everyone was. The next day he passed.

I wish that I could go back and start from the beginning again. My family was in denial about my mother's Alzheimer's and it hurt her. We could have eased her into the changes instead of fighting her about them. I look back now and I see all the signs, all the changes and the methods my father used to cover for her. They were the perfect little elderly couple who liked to travel the world, exercise, visit with their friends and planned to live forever. My sister and I wanted to keep that picture in our heads and we overlooked all the changes. So mom could not cook anymore, and then her walking slowed down, and she could not put on those pants with buttons but she could still read and talk on the phone when we called. My dad explained to us that she gets a little lost sometimes when my sister found her wandering at our favorite resort in Mexico. This was our seventh trip...she knew the resort like the back of her hand. Could have, should have, would have... When I finally did kick into gear, I tried and hope that I did my best. I invited mom and dad for Christmas 2008 and then kept her with me until her death last April 2011. I did create the boot camp/spa camp that the other member talked about. Slowly, we put mom on a special diet. No sugar! All organic foods, an exercise program, mental stimulation and loving independent caregivers at home. Such a learning curve, what do you do when someone is sundowning? How do you stop her from cussing out the caregivers and the grandchildren? How do you explain to your 9 year old that grandma is sick not crazy? How do you find independent caregivers when she becomes incontinent and then even worse, a dead lift? Who wants to have their cute little mother called a dead lift? And the final straw, a bedsore! Oh my, I lost it over that one. Full time caregivers, moving her all the time, cleaning her ever day, and we still end up with a bedsore. How do you explain to your 85 year old father that mom, his mate for 56 years, is not going to get better and we cannot take her to a foreign country for a cure?
If I knew then what I know now, I could do it better...

Great article, Carol.

I guess I've had good support or good training or good genes, because even though I recognize mistakes I've made, I am not tortured by them. I truly think that I am providing excellent care for my husband with dementia.

Looking back, I wish I had seen a therapist for myself, at the beginning. I wish I had learned more about caregiving to start with. (I think there is much more available now than there was 8 years ago, when I began.) I quickly learned a lot about the disease. I knew that hallucinations were likely, for example, and that helped, but I wish I'd read or heard more about how to deal with them. Some things I did instinctively right, and other things I went through a lot of "error" learning by trial and error.

I don't need to forgive myself. I did nothing evil or malicious. I did my best. I'm still doing my best. I made mistakes. I'm still making mistakes. But I'm consistently providing the best care my husband can have. I am grateful that I can do that.

Carol, caregivers who anguish over mistakes really need to hear your message. Thank you for providing it.

I like your article because it makes you think, about the present time, the past and the future. I care for my mom and it is a learning experience that is truly difficult, but one that I'm grateful for. This website is such a great educational resource to those new to the task of care giving, and to the old pros. who just need some support and a listening ear. I think we all would do things differently in our life if we are looking in hind sight. The thing is we just have to live and learn. Each new day can be a canvas upon which we can learn from. The good,and bad. No one is perfect however it certainly takes a special person to be a full time care giver. Kellyb

What a wonderfully helpful reminder to those of us who are in the middle of caregiving. I'm here because I want to be, but that doesn't make the experience much easier. And an experience is really what this is- a learning experience every day. I try to remember that and to keep doing my best. That is all any of us can do. I will never regret the time I've been able to spend with my mom, and I'm trying to learn not to let the times I haven't been at my best eat me up. Thank you for this article and for the comments.

After 8 years of taking care of my mom, she passed away last November. I'm still stunned, she was my best friend and my roommate, besides being my mom. I know I made mistakes, and I have regrets about things I probably shouldn't have, but I have 2 people in my life still that were with me and her for the last year of her life, and they try and make me understand exactly what you wrote up above. You have written the perfect words for these imperfect thoughts I have. I wish I could go back and do some things different, in hindsight, but I would never give up any minutes I spent with my mom, only asking for more of them. I miss you mommy. Can you hear me when I cry?

Hindsight. This is what I would do. First, to test to eliminate all Rx for a few weeks. My mom was on perhaps a half dozen that cause dizziness, mental confusion, dementia. Look up Beers Criteria or Beers List for info on this. Work with doctor to reconfigure doses, formulations from long lasting to quick acting. Many drugs can be stopped all together.

Second, I would have found some sort of boot camp for Mom to get healthy. Perhaps a month stay. Not a nursing home, but a place where diet can be altered, appropriate exercise and physical therapy, lots of cultural enrichment, etc. Weight lifting. I don't think such a place exists, and it should. There are things like yoga camps, but think facilities specific to the elderly should be created. When family caregivers step into the situation to help, the elder has probably let himself go, is perhaps depressed, etc. Not make the initial involvement a piecemeal endeavor. Go for the goal line immediately. While the senior is at the facility, perhaps going through it with family members, things can be done in the home to clear it of clutter, deep cleaning, safety things installed, etc.

I suppose one could create a home boot camp. I wish I had gone for the ultimate instead of doing a few small things and hoping Mom would come back to life and pick herself up again. Nope. If I had done the drug elimination program, she would have sprung to life almost immediately, I think, and then would have had the resolve to get her life together more herself.