Yesterday a family friend called very excitedly about a new apt he bought in NYC and wanted to show off the views. I refused to watch because what's the point? I can't leave my mom and go off to NYC.
As friends & neighbors make vacation plans now that everyone's vaccinated, I'm getting upset. Even if we take mom on vacation, she'd want to sit in the hotel room or I'd have to just shadow her while my husband & kids stride ahead. They will slow down and watch her if I want a break but you know what I mean.
Mom's only 85 and mostly ok physically - she could live another 10 years. I will be 65 then and who knows how my energy levels then will be....
We cannot put mom in MC since she just came to America and will not get any govt benefits and we cannot afford the payments. She has very little money of her own if we convert it to dollars. We cannot leave her in India with her moderate dementia - there' s no one there to check in on her.
Anyway, how do you all cope mentally when you see other people enjoying life and you can't do the same things as they do? I guess I will hire sitters if I want to do a day trip. I cannot even imagine a week-long vacation now. I get so angry when I see mom sitting passively in the living room and just staring out and reading the same newspaper over & over again. I've to do things for her to have some quality of life.
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.
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.
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!
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.
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!
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.
Thank you
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.
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.
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.
All your replies are much appreciated.
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.
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.
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.
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.
Assisted Living Facilities are opening up here in Florida. Perhaps there is one nearby you.
Thank you for replying.
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.
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.
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