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


Dad had Parkinson's ALZ, Mom is depressed and has inflamed ribs so can't get him up. I am there 3x's a day - getting him up, bathed,dressed in a.m., bathroom in afternoon & bedtime. Mom is showing signs of dementia but is in denial. She refuses to bring anyone in as I am oldest & they are my responsibility - old Italian mindset. No family in area. Complains about having no friends, moved here 5 yrs. ago from Ct. Dad diagnosed with Parkinson's 1 -2 months after they moved. I retired 1 1/2 yrs ago & walked into full time caregiving. But to listen to mom talk she has it the worst. They are 85 & 83. She has a friend in town but won't go see her as she doesn't feel it is right leaving dad with me. She has no problem asking me to take them here & there so she can get out. She always had a few drinks prior to dinner, but she now has 3 sometimes more. Is there such a thing as alcohol ALZ ? My time is not my own any more! Thank God for my husband - I don't know what I would do with out him. We also have my daughter,son-in-law & grandson living with us. Talk about being sandwiched generation. Try setting boundaries but she forgets what plans I have told her about & then swears she was never told. That causes upset ness. I am at a loss now! Any suggestions on what I can do for some inner peace or coping! There are days like today where ai am ready to scream! Thanks for letting me vent.

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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.
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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.
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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!
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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.
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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.
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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".
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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.
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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!
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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.
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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.
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