I don't know how to act. Does anyone ever feel they are buried?

Get a small whiteboard that you can stick on their fridge and write down upcoming plans so she can't say you didn't tell her. Get your mom in the habit of checking it so she knows what's coming up.

You have to start taking care of yourself, this is a marathon and not a sprint. If you don't hold up, the whole house of cards will collapse. Get some outside help in. Find some good Italian caregivers for your mom and dad. You can't do this all alone. You've got two parents who will need more and more care. Start planning now for what happens when they need to go into a facility, because with two of them, that will happen sooner rather than later. You can't be a 24-hour on-call nurse/caregiver for two parents with increasing needs. But get some outside help NOW!! Also check out day care facilities, so you can get them out to do some other things.

The mindset of our mothers always puzzles me. My mother feels that it is the place of the daughter to take care of elderly parents. The thing that slips her mind is that neither she nor her sisters took care of their own parents. My mother visited them once, maybe twice, a year and wrote about that often. She invented New Rules that certainly seem self serving.

Nankathy, I don't know if it was the same with your mother. If it is an old tradition, it sounds like a good tradition to let fall by the wayside. You need help. You have too much demanding responsibility for one person, and I am sure that your life is certainly not very fun at the moment.

I believe that serving others is a very good thing. Maybe that is a good reason to share the responsibility. I would find some way to introduce help gradually into the house. It will not be an easy thing to do, with your mother so opposed. Perhaps you could bring someone in that will only be there a short while on a day. And maybe after your mother gets to know and trust, she will allow the person to come more often. I hope that you will find something that works.

You ARE buried in too much caregiving. I heartily agree with Blannie and JessieBelle.

Too often we caregivers destroy our own lives in an attempt to make others' lives just okay. Your parents are not happier because of your sacrifice, so your sacrifice is not justifiable. Get someone else in there. If there's no $$ to pay for it, there are community services available. It will take some energy you probably don't feel you have, but you need to pull together one last effort to extricate yourself. It will be really difficult but you will feel SO much better when it's done.
You'll be Elbe to have nice visits with your parents when you don't have the weight of doing it all.
There IS. Alcohol dementia. It's called alcohol encephalopathy. Over time in some people excessive alcohol can cause brain damage. If this is the case with your mother, be aware that her condition is caused by poor choices she has made. Don't let her drive you to drinking too much yourself!

How difficult this is. It seems as if you're spending the better part of three days as a full time caregiver when you had been planning for your own retirement. Oops, this can be so often the case.

Depending on her size, three drinks today is way too much even for a large woman. Yesssss, there is alcohol dementia. But there is also something that looks like dementia, called Wernicke-Korsakoff syndrome, which is caused by alcohol depleting thiamine (vitamin B-1). People don't usually admit to their doctor that they drink a lot, and unless the doctor knows that, and knows there's memory loss, and puts two and two together, the person may continue doing what they're doing, the vitamin loss will eventually cause permanent brain damage, and the dementia can become permanent. Alcohol dementia can also coexist with Alzheimer's or other forms of dementia. You should get your mom to the doctor with the whole story about her drinking ASAP, right AFTER you get your mom and dads FPOAs & HPOAs in place if you don't have them already!

Be aware that your mom is likely self medicating with the alcohol to quell physical or emotional pain. But the problem you seem to have right now is that your mom is impaired and getting worse and SHE is taking care of your dad by herself for days a week. That's probably not going to be possible for much longer if your dad is to remain safe. The problem with dementia is, the longer they have it, the worse it is, the less rational they become and the last you are able to reason with them.

you're going to have to take the bull by the horns so to speak, put your foot down and just tell your mom how it's going to have to be. You need to get help in sooner rather than later. A slow introductory transitional approach will not be good for your father or for yourself. You need to move from a hands-on caregiver to an overseer. That alone will be plenty of work. It's going to have to do something like,"mom, either we get help or you and Dad are going to have to go to assisted living because I can't keep this up".

You need to get some control of the situation for you sake, as well as your parents. You need to hire home health aides who report for at least one shift a day. If you can get a live in aide, all the better--you have 2 people who need supervision/assistance.
You will have enough other things to do, setting up meds, setting up medical appts and transportation to and from these appts. After 85 years, try to get as many doctors and therapists to come to the home, get a barber to cut his hair in the home. After 85 trying to get someone out with limited mobility is an unneeded struggle. Most doctors are still operating from their offices so that
will be needed but I had a foot doctor who made home calls for my dad.

I would try to get your mother out to an adult day care place in your area so she gets a chance to see others. There are medical day care places and many have transportation (a little van). Some are covered by medicare too so that would be great.

It gets harder as they age but perhaps a church, veteran group has people who visit the elderly men in the area. Being new to the area probably lessen their ability to be around friends but maybe he could call men back where they used to live. Men have difficulty finding men friends to speak with as they age because most men don't live as long as your father (85+ years). My father hated all senior groups because they were full of very old women and the men were at least 15 to 20 years younger than him (i.e. he was 88 and the men in the group were 68-72 years old) .

Get as many services that are free as possible. Unless you plan to cook for them all day every day, see if they can get meals on wheels. They like to see the man delivering the meals and it will take one less task off your plate. You can supplement it as you want or need but they attempt to give a balanced diet and most seniors stopping fixing balanced diets.

Good luck, step back and reassess the situation. This may continue for many years. So you need to conserve your energy level to see it through. You need time for your husband and family too. However, I am impressed that your husband has been so helpful, too often caregiving children don't get that and it shows you chose well in the husband department :)

Things will get a bit better, you are leading with your heart but you need to remember to engage your mind too. Hang in there.

Looks like you were given plenty of good advice so I will just empathize with you: I use the terms "being buried alive", and "being smothered" to describe how I feel these days. When we are feeling like that, it's time to break free of that grave or that pillow and give ourselves a chance to breathe!

Hi NNkathy,

I am in a similar situation and am just figuring things out little by little. I think you have gotten some good advice here. It is so hard, but you must dream some lines and be sure to take care of yourself as well as your parents. I think we tend to feel like it's all or nothing, like we have to totally take take of everything or we are bad children. But I think what I am starting to get more comfortable with, is that I need to do the best I can, while accepting my limitations and preserving some life of my own. It's VERY hard. But in a healthier, more reasonable state, our loved ones would want us to have some balance....well, most would. After all, even getting people in place to help and or a nursing home or AL, it requires so much of your time and effort. I am POA and health care proxy..it's practically a full time job. I have a full time job and two young boys...I'm struggling to find that balance I was talking about. Stay strong, get balance, make peace with your own limitations, and good luck :) I know how hard it is.

My parents also wanted only me to take care of them. I missed out on my children's teenage years. It is a major regret that I did not take care of my own family first. Eventually I was able to see that I needed help and against their wishes we had visiting nurses, pt, ot, home health aides. They complained but they also enjoyed the company and started to look forward to some of the visits. It took me a long time to learn to say no and say it in a caring way. "I'm sorry that makes you unhappy, but I can't do that." Counseling also helps, I know it seems like there is no time, but making it a priority will help you and by helping yourself, you will help you parents. I do not wish this task on anyone, it is so hard. Good Luck.

Great answers by all here. I think we can all agree that buried is a pretty good term. Overall it looks like your parents are ready for AL or, at the very least, outside caregivers to come in. It's just too much for one person. Then, you put yourself FIRST and get on w/your life. If we don't set boudaries/schedules, they will run over us and into the ground--fast! Good luck w/everything. You are not alone.

Start with out of the house help. Yard work, send out the laundry, grocery delivery....whatever will be of help. Then bring in some one some and gradually add days and hours.

Your health will suffer, if you keep this up. What happens if you die suddenly? (It happened in my family.) Please get help, or have your parents make their arrangements for AL.

I really cannot add anything else because everyone has said it so well. If I did not get help I would have sunk into such a deep depression that I would have been of no help to anyone. I keep calender on the kitchen counter that says what is going on that day. That way when my Mom says that I did not tell her I point to the calender. The house gets cleaned by an outside agency. My Mother has tried several times to fire them. She seems to think that I should be cleaning her house. No - I have enough to do. I have hired gardeners for the back yard and am getting ready to set her up with meals on wheels because I am tired of making food. She grumbles and says things under her breath but honestly I just ignore it. My sanity is worth more than getting into it with her about unreasonable demands on my time. The interesting thing is that I remember my Mother visiting her Mom maybe twice while she was in the nursing home. She would never have sacrificed for her own Mother but feels that her daughter should sacrifice for her. That generation of women is something else.

hadenough, you are so right about many mothers of the generation now in their elderly years.

My mother is about to turn 86, and has an enormous sense of entitlement about what her daughters "have to" do for her "because she is [our] mother." We are supposed to leave our families and careers and move back in with her -- halfway across the country -- because she doesn't want to leave her house, and no one else quite meets her standards for taking her grocery shopping, to her church, etc. when she doesn't feel like driving herself. The only sensible part of all that is that she shouldn't be driving. Daughters, according to her, are destined to be caregivers; funny how she didn't spend ONE MOMENT giving care to her own mother or MIL -- never even had them over for a holiday meal once they were elderly. It's a whole new set of rules for her own daughters, however.

You just keep on doing the right thing to maintain your own sanity. You are right to remember that your health, including your mental health, is your proper first priority.

Nankathy, not even the Italians in Italy think this way any more, if they ever truly did. I field the same attitude and comments from my mother, who is also an immigrant but not Italian. Recognize that she's dressing up her personal wishes as a cultural imperative, which it probably never was anyway. She can't coerce you into doing their housework and cooking by firing the people you hire. You are not her maid; you are her daughter!

Perhaps the hardest part of all this is bearing the insult that your mother thinks you were born to be her floorscrubber and general dogsbody.

My husband has early onset dementia. He is still somewhat functional at home, in this own schedule. He mostly needs someone to be there to make sure he doesn't do anything strange, which he does, and to help when he forgets what things are or how to do things, like how to pull up his pants. He totally depends on me and DID NOT want anyone in to help, but after 12 years of decline, 5 with a diagnosis, and knowing it is only getting worse, I knew I needed to start getting help.

I have always told him that I would keep him home as long as I could, but in order to do that I was going to need help. I told him I didn't like the idea of strange people in our house either, but we were just going to have to get used to it, if we were going to make it through this. So, we should just give a try, an see how it went.

We have started with respite care through the VA, contracted through a local caregiving agency. I told the agency that it was important that he enjoy their "visits," and that it needed to be the same 2 or 3 caregivers. They do a little house work for me, and they play card or board games with him, which he can still do with some help.

The first time a caregiver came, I stayed 30 minutes and got them going with a card game. He said the first couple of hours were terrible, but then it got better. He says that every time a new one comes. So far we have one that comes 90% of the time, but don't have a consistent backup yet. He has gotten to where he looks forward to the visits, with the 90% caregiver, and stills dreads the new ones, but we've only been doing this 2 months.

At first it was weird to have 6 hours where I didn't have to be "on duty," keep explaining things or keep an ear out, check for strange happenings, clean up messes. I couldn't imagine what I was going to do with that much time. But I have started going to a creative writing group at the local senior center, lunch with different friends, and doing genealogy research.

I really didn't like asking for help, but I'm glad I have. It has really helped my attitude, and I think it will make it easier to add more services as he continues to slip away. I also feel relief that I'm not going to have to this alone.

tooyoung, Was glad to hear your situation. My husband also has dementia but not too bad. Memory lose what he ate, where we were, people including me thinking I'm his sister (white hair). Loves to play cards, sleeps a lot and can work on puzzles. Am planning help to come in and glad to hear you take off.

The others did have good suggestions for you. I just want you to know you are not alone. Sometimes that helps too. It helped me to read about you and your problems. I really read all the suggestions and some of them are great. They seem to be coming from professionals, so I don't want to get in on that, but know that a lot of us feel like our life has ended, since we had to start taking care of our parents. Also the sandwich generation, I believe that too, because my mom never had to care for her parents, but she expects me to abandon my own family to take care of her alone. I hope you can get help from all the other suggestions. This website makes us feel like we are all family because we are all going through the same problems. Like you said, it also helps us vent. Good luck.

Nankathy,
I had those same feelings until just recently. I guess it takes us hitting bottom with the caregiving sometimes to realize we need help too. My mother didn't want anyone but me doing everything. Well, since my recent wakeup call, I am setting up help to come in and not playing into her unreasonable demands. I feel a new found relief and peace. I have been letting her know this is the way things are going to be and standing my ground just like I did with my kids. It is working out just fine. When she gets angry or nasty from the dementia I just was away. She doesn't even remember it. I learned this from this website and thank you to all of you for your honest help and advice. Take that next step for yourself. You have to take charge of the situation and not let it continue for your own health. Good luck!

As lcarmichaelslp says, "I'm sorry that makes you unhappy, but I can't do that." Repeat as necessary.

At times I wish there was a law where once parents get to a certain point in their lives they be required to move into a retirement community :)

Many times I wished my parents would have done that, especially when I spend 2 hours at a hardware store and the only thing my Dad buys is a light bulb. If he and Mom lived in a retirement community, he could hop that bus and go daily to the hardware store, and Mom go daily to the grocery store.

Yes, I feel buried even though all I do is *drive* my parents. I should feel lucky that they are still so independent. But I am tired, resentful and overwhelmed. Guess it all depends on how we view the things we do, and our own age related health issues. My parents are in better health than I am. They might outlive me.

Then I read an article on the AgingCare website "Not Everyone Is Cut Out To Be a Caregiver" and that made me feel so much better. Nurturing isn't my strong point and I honestly admit that. Since I couldn't have children, and I hated housework, I was busy building a career most of my adult life. I deserved to feel resentment when I had to stop my career, which had great benefits, find part-time employment [which gave me zero benefits] so I could drive my parents as their appointments are only Monday-Friday during the day. My parents step into a taxi? Never.

Wait a minute, my Dad never had to stop his career and take care of his parents. Hopefully the next generation will plan ahead and try not to burden their grown children or younger relatives. The grown children need to enjoy their lives, too.

I thought my mom was the only one demanding things from me, but I see it's the norm. Yes, I just ignore her when she demands too much. I do give in a little too much, and others tell me that, but when I've had enough, I don't. I just we just have to play it by ear. It seems that in the future, changes have to take place. As it seems, we will live longer and longer as science progresses. Our children and grandchildren need to find a way to make this task less burdensome. Maybe change some laws and even have a deduction from our paychecks (like with Medicare) for this purpose. To pay for in home care in the future. I'm not sure, because I'm not a politician, but maybe someone can come up with a great idea. Something needs to change. I don't want my children to go through the same I have to.

My Mother just came outside to ask me why I was limping. I had a terrible accident 2 years ago which shattered my leg- guess she forgot. However the slightest physical problems she has I have to listen to in great detail. I had no idea that as we age we really do not care about other peoples problems. So strange to me- the lack of empathy coupled with being entitled. I just do not want that happening to my personality!

What kind of transportation to appointments does Medicaid Cover ?