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1st, Prayers for you for strength and wisdom.
2nd. It will get better. You will adjust and find ways to cope and your mom will adjust to being in a new country. It will take a while.
3rd. I agree with the others who urge you to find ways to take vacations and days off. You still need to grow and change and be with your family. You can't put your life on hold for 10 years.
4th. Look into community resources. Churches and community centers offer programs for people with dementia and cognitive impairments. You might be able to find an Indian-American community center that can offer programs in your mom's native language.
5th. Look for help from friends and family. Maybe you could trade days off with someone else that needs elder-care. Maybe you can find a group of friends for your mom to interact with.
6th. Look into vacation rentals for family vacations. My parents, sisters and our families have rented lake or beach houses or mountain cabins every 2nd year for almost 30 years (The baby from the first trip just got his PhD!) They are great as a base that accommodates a wide variety of interest.
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I feel for you, wearynow. Many of us are in the same situation as you.
Open a bank account and convert your mother's money into American dollars. Use this money for respite care which is a temporary short-stay in a nursing home that can range from a few days to several weeks. You'll be able to have some time off to go on a vacation, or just to have your home to yourself again for a little while.
Hire some homecare aides to help out too. This way you will at least get a few hours off during the week for yourself.
I'm sorry to say, but this pretty much as good as it's going to get for you and your situation. You brought an 85 year old person with dementia to a foreign country. Surely, you and your family must have known that the American government wasn't going to pick up the bill for the elder with dementia to go from the airport to a memory care facility or nursing home.
If your mother and your family really don't have any funds, there are charitable organizations like the United Way who have unpaid volunteers that provide in-home companionship for elders. The volunteers also provide transportation to things like doctor's appointments and social outings. Contact your state's department of social services. They will give you a list of free resources that your mom may be eligible for.
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I am in the same boat. I’ve been caring for my mother for 10 yrs. She will be 95 yrs old soon. I spent all my 60’s caring for her and she is at the end of her life, but she is still here and managing with my help. She’s been on hospice for 2 yrs. If your mom is in fairly good health, be prepared for the long run. My mom is still in her own home a few doors down from us. It is a depressing life, and one where there is no way out. I am the default caregiver because both my sisters passed away early on when mom was starting to become dependent. (She has very poor eyesight and couldn’t manage in her own anymore). She now has end-stage chf and stage 4 breast cancer that is metastasizing. It is never easy. And we were never in a great relationship my whole adult life. I wish I could give you some sound advice, but since I’m 10 yrs into this, what can I say? My own health has suffered terribly, and I had to draw up boundaries or I was going to perish. I now depend on the great care from hospice for my mother and they know of my own health battles with stage 3b non-Hodgkin’s lymphoma, and they help as much as my mother will let them help.

Make your own health your top priority somehow. Try not to to compare your life to others. It doesn’t work. Pray for guidance and don’t let guilt run your life. I hope there is a point where you can find someone to help you out in your situation. Look into things to give you more time for yourself so you can take that 3 or 4 day respite. You can do this for yourself!
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Make a detailed plan of your mother’s daily routine and your requirements. Take your list to an agency and discuss which care workers are available for the hours you need. Try it. Plan a day off. If one agency, one caregiver, one day off does not work out, try others till you get the right fit.
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I understand totally. I left my job to take care of my Mother 4 years ago, but she has been living under my roof going on 31 years. So I have been taking care of her for a long time but now she is totally dependent on me I must do everything for her except sleep. I was happy came and went as I pleased didn’t have to think about my Mother first. Now I am her prisoner I do get out but for maybe a hour at a time to do shopping or appointments. If there is a event I can not attend. I cannot be gone for that amount of time. I am grateful because before this I had to bring her everywhere I went I could not leave her at all because she would try to get up and fall. And would not believe she couldn’t walk or stand by herself but now she realizes she can’t. So I am able to do my errands.
before this I had to do my appointments or errands on my husbands day off. And I still can’t go to events unless we put her in respite. Which I have done it has saved my sanity. We have been invited to a wedding in January which I can not attend, a friend of our had a surprise birthday party last November I couldn’t go, my husband went. Plus she has no memory in her mind I do not exist I am just a good friend. She is 93 this year, and wants to go home to her parents. As I said the worst thing is being a prisoner as I call it, any last minute events I can’t go. Actually any event I can’t go. I do have a home health aide weekly to bathe her which is a godsend.
but for now my life is on hold.
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As a caretaker for many years, I agree it's the hardest, saddest job ever. You love your parents but want your old life back and it brings fear and anger as you watch your life "slipping away". I understand 100%

Your Mom isn't going to change or be motivated to do new things. She is who she is, and memory loss, eventual hearing and sight loss, will most likely blunt her enjoyment of even the simplest of pleasures.
Try getting her interested in looking at old photos and listening to music she loves. Music was a great influencer for my Mom. Keep in mind that your mother is elderly, afflicted with memory loss and new to this country - a very hard challenge for her too! So maybe you have to forego a vacation this year, but take steps now to make future trips possible.

Most of my coping came through prayer and friends. Although I could rarely meet with them, long conversations with my friends and some family were comforting and a great release. This site was also my "go to" every morning and evening. It helps so much to know there are others with the same - and much worse - situations where you can get advice, vent, and even be grateful things are not as bad as others.

That said, you can carve out a bit of happiness for you and your family - you owe it to them and to yourself. Put feelers out for a part-time caregiver. It will do wonders for all of you. Talk to everyone you know about it, get the word out. You will be surprised at how a 3-4 hour respite can rejuvenate your spirit. If you get the right person, the time you get away can increase according to your finances.

I urge you to contact a good elder law attorney or senior group to see if your Mom can eventually apply for Medicaid home care. I found this online which may be helpful to you. https://www.healthcare.gov/immigrants/lawfully-present-immigrants/

Whatever you do, DON'T GIVE UP! Even if you can't go on week long vacations now, insist on doing other things that make you happy. If you don't make it happen, no one else will.

Hang in there. We are here for you - and keep us posted on your coping progress!
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About volunteering-maybe your local library might accept Zoom volunteers to read stories to children? Or a Sr. Center might be interested in something similar, maybe calling a few people, or coordinating some outings or shopping for homebound people? Local govt. might have department that caters to older citizens' needs and might accept volunteers or have ideas for you, or even day programs for your mother to attend.
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Its so hard being in the situation you are in. I agree with others, in that you really only have 2 choices: (1) Get outside help to sit with mom from time to time (2) Go rent yourself a nice condo in a beautiful sunny spot, with gorgeous beaches and ocean waves (like Gulf Shores, Alabama 😁), and let her sit on the beach with you and your family. Get a nice cabana, umbrella, or wide brim sun hat, and get everyone out for some healthy, mask free, living. If mom wants to sit on the couch, or balcony, let her do her own thing. Don't stop living. It might be just what you all need!😎🌄☀️
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Understood. Especially traveling. Friends and family go off (not during pandemic) to wonderful places, and traveling is my great love.

I am living with it by volunteering a lot and meeting new people, which keeps me very busy and fulfilled. But I totally get it.
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wearynow May 2021
If you don't mind me asking, where do you volunteer? Is it in-person or Zoom? I am an empty nester and looking for Zoom volunteer gigs since I can't leave mom alone at home.

Thank you
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I am in the same boat as you are. My mom don,t speak English at all. She is 78. No money for AL or NH.
I have no life because of her. How many more years like this. Why do I have to live her life. I am not 78 yet.
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wearynow May 2021
So sorry and hugs....it's very sad and tough
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Oh, I understand. It's so difficult. You will slowly get past the outright despair and anger most days, but they will pop up when you least expect it. Really, you just have to ride out the anger and try not to dwell on it or you will make yourself even more heartsick. Depending on the level of care needed, are your kids grown enough to keep an on eye on your mom for a day while you go out? Is your husband able to sit with her for some time while you go out for a bit?
Vvacations may be out of the question unless you can get her onto respite care for a week. I tried a couple of years ago, but couldn't find a facility that would take clients for a week.
I am so sorry that you are having a hard time. It's difficult to surrender yourself to caregiving, but sometimes you have to adjust your self to accepting that you are in a phase of life in which you are playing by new rules. As time goes on you will learn a bit more how to grasp some bits of happiness here and there--even if it's living vicariously through a friend's window in NYC. Go easy on yourself everything you are feeling is normal. Hugs and good luck.
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The financial aspect for elderly is the big factor in getting help. You either have lots of money to throw in that direction or you don't. Not much middle ground. Since your mom COULD manage some trips, are there any relatives who could travel with you as caregiver? Or could stay at your house with her so you could travel?

It is very difficult to listen to others chat about travel and other outings while you are in the caregiving role. It's even worse when it is other siblings do it. They either justify it as 1) it's a decision you made and they have no remorse watching you drown or 2) they never bother to listen to what they are saying to you. Would like to tell you it gets better, but it doesn't. Reach out to ANYONE you know that might offer you a little reprieve every now and then.
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Thank you to each and every one for responding, sharing your experiences and reaffirming that I have to get outside help. I'm feeling calmer now - till I get angry when I have to wash mom's poopy clothes . She claims she washed them but actually somehow takes them back to her room and the reeking smell is a dead giveaway. Anyway, I posted about all of this earlier and got feedback from all of you here.

All your replies are much appreciated.
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Riverdale May 2021
There is more right now that is not very positive about living in NYC despite a view. The present leadership is very questionable. I have lived in NYC and in a suburb 40 miles north of it. The crime wave is skyrocketing. I understand your general feelings. I just think letting go of life in NYC should be one of them.

I have a 90 year old mother who is immobile in a Nursing Home. She keeps talking about walking again. She lived past years in a manner that contributed to this situation. It frustrates me while breaking my heart. She has had periods in her life where she chose to pray avoiding necessary medical treatment. I tried fruitlessly to help her. It is sad for me to say but I always wished for a different mother.
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Life is cyclical. There are times when things are up, and others when things are down. It's in your hands to make changes to enable you to have some happiness within your boundaries as they exist right now.
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NeedHelpWithMom May 2021
Wise words. So very true!
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I feel exactly like you! I hired a home aid who is great and this week we could go to 2 day trips. Leaving at 8 a.m. And coming back at 4 p.m. While mum staid with the caregiver.
I am looking for a respite facility for August, I am not sure it will be possible because of the pandemic, though. But our aid said she is willing to stay here 2 or 3 nights if I want to go on at least a long weekend. So I hope I will be able to disconnect my brain from caregiving for some days...
I haven't had a real holiday with my husband and son since 2018...and that was only 3 nights away with my cousin sleeping here not to leave my mom alone... Maybe some friend or family could help you?
Try to call some agences to hire someone, I also called the social assistant for the elderly of my town.
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I completely understand how you feel. I felt the same way when I cared for my mom. Our lives come to a dead stop, am I right? There isn’t anything left except for caregiving and the anxiety and depression starts to swallow us up!

I did so many things wrong in my caregiving days. I had no frame of reference. I wasn’t prepared for my caregiving years. I foolishly thought that I could grin and bear it, until I realized that I seriously needed help. I was in over my head! I finally made an appointment with a therapist. I reached out to a social worker who recommended this forum to me.

I learned that I wasn’t alone as a caregiver. I had many responses from the posters on this forum which helped me gain a healthier perspective on my situation.

Reach out to others. Look into respite care at a facility. Go on a vacation. You not only deserve a vacation but I feel it is truly needed for a caregiver’s mental health. Otherwise, caregivers burn out.

Don’t make my mistake of plowing through and sinking deeper and deeper into misery. Take action now.

It is hard to be happy for others if we want happiness for ourselves too. Try to be happy for them though and be glad that they wish to share their joy with you. It isn’t their fault that you are in this situation and I doubt that they are doing anything intentionally to hurt you.

Wishing you peace during this challenging time in your life. I hope you find joy again soon. I will keep you in my thoughts and prayers. Take care.
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I would be feeling hopeless myself if I were in your shoes. Not everyone is a 'homebody' and happy to be caring for an elder with dementia, knowing it will progress and tie you down even further, let's face it. My mother is 94.5 and I'll be 64 in July; she lives in Memory Care because, by the grace of God, she and Dad DID have the funds to finance Assisted Living until 2022. If not, I'd be in the same boat as you as an only child and not jumping for joy about it, frankly.

I think you need to find a way to hire in-home help to relieve you so you have something to look forward to. Devise a plan whereby you can get away every day for X amount of time, even if it's only an hour, and take a bath or listen to music or go for a walk and regenerate YOURSELF during that respite period. Save up her funds and figure out how to convert them to USD in order to plan a real vacation for yourself and your family. A whole WEEK away from everything and all the caregiving duties! You'll come back revived and rejuvenated, at least for a while, until you can do it again.

You deserve a good quality of life as well as your mother. It's not all about her; it's about you and your family as well. Put your heads together to figure out how to make it work for all involved. Also look into daycare for your mom and see how much it would cost, even if you yourself have to pitch in some $$$ of your own to make it work. Not that I often recommend such a thing, but what is YOUR sanity worth, in dollars and cents? If it's at all affordable, consider it an option.

Best of luck to you.
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Can you possibly pay for a week's worth of respite so that you can take a vacation?

Assisted Living Facilities are opening up here in Florida. Perhaps there is one nearby you.
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wearynow May 2021
Since I'm from India, I'm trying to look for an "Indian" respite care where mom will get Indian food & people speak her language although mom speaks and understands English very well. I feel familiar food and customs will increase her comfort level if we put her in respite care but I don't know yet if such a place exists near us.

Thank you for replying.
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Sounds like you're definitely suffering from depression. I hope you seek some help for that, because realistically just because you are in an unhappy situation, doesn't mean that you still can't be happy for others.
It's important at this point that you're taking time for yourself to do some things that you enjoy and that don't involve your mom. That's the only way that you will be able to continue on this journey with her. If you have to hire a sitter to come stay with her for a few hours a week, so you can get out and do something fun, then do it. It will be worth every penny, and you will be amazed how much it will do for your mental attitude.
And once you get used to that, then you can start to consider longer trips away with your husband and children.
Only you have the power to change your attitude towards the situation you're in with your mom, so please take the necessary steps to do just that. I wish you the best.
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wearynow May 2021
Thank you, funkygrandma, for reminding me that only I have the power to improve my life. I'm not depressed per se - I do work p/t where I meet others and I can do Target runs while my husband & son watch mom. But I get this feeling of hopelessness once in a while that this journey is a long, boring one.I also get jealous of others easily & Im trying hard to shake off this horrible emotion,
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I was just thinking about you and wondering how things were working out. I am so sorry. I know the past couple of years has been really hard. But what were the alternatives? Your Mom needed help and there was none in India.

Would the money Mom has at least pay for a week of respite? Or may it be possible to hire help? Mom just got her greencard didn't she so it will be 5 years before you can get help for her.

I really have no solutions only to say you are not the only one who has this problem. You had to make a hard decision bringing Mom here knowing there would be no government help. All I can give you right now is a ((HUG)). Maybe someone else on the forum is in the same boat.
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wearynow May 2021
Great to hear from you, JoAnn! Maybe mom's money can indeed pay for a week's respite but it''s proving complicated to convert it to dollars where we have to fill out obscure forms - but definitely this could work whenever the money comes in, Thank you
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Maybe you can't go to New York but you shouldn't have to be tied to your mom 24/7, that WILL lead to resentment and burnout. Do follow through with your plan to hire sitters, and do it as often as possible ( I recommend at least once a week if you are planning to be a caregiver long term). And look into the logistics of short term respite stays at an appropriate facility for your mom so you can get completely away for vacation time.
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wearynow May 2021
Yes, cwillie...I will try to follow through..thank you
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I made the choice to take care of my Mom and I knew ahead of time what my life would be. I'm a homebody by nature as well as a loner. I enjoy being at home so I don't mind at all taking care of my Mom who has vascular dementia which is progressing.

I think the first step is "acceptance".. Once a person accepts the disease they can let go of the anger. I know some people who are still in denial of their loved ones situation.

I remind myself that my Mom will not always be here so I try to make each day with her special (we play cards together, listen to music, etc.).

We all have different personalities, some people are cut out to be a caregiver, others are not.

Not everyone is having fun and enjoying life. It may appear that way to you but you really never know what another person is feeling unless you walked in their shoes.

That said, try to find happiness within yourself. Write a list of the things that make you happy. Most people have hobbies they do at home, I crochet, knit, cook, etc.

In your case hire a sitter and go on a day trip, you will feel better.

I wish I had better advice for you.

Jenna
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wearynow May 2021
Thank you, Jenna. I appreciate your response. I have accepted the disease but it's all still so sad . Good luck on your journey!
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