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.
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
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.
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.
Assisted Living Facilities are opening up here in Florida. Perhaps there is one nearby you.
Thank you for replying.
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.
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 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.
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.
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.
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.
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.
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
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!
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.
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!
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.
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.
Yes, have your mother associate with other Indian people. She will soon be reverting to early memories and speaking her native language and having others to remember with her will be comforting for her. You will likely find support for yourself there in people who will sit with her so you can get out and friendships with others who understand.
People with dementia do well with others who have dementia. Isolation is not good for either of you. Reach out. There are many willing to help.
You need to get some Friends and Family, Church Members, ect enough that can donate an 8-12 hr shift every day for a week if needed or just a couple hrs a day to check on your mom so you can take a much needed vacation.
* Encourage, ask for support fr your family to work with you and take on 'equal' responsibility - or at least more responsibility - i.e., ask your husband and kids to NOT "stride ahead' as you say. Ask them to walk with her 'equal' time when you are out. How is this responsibility all on you?
* Yes, energy levels certainly shift from my experience, now a few months from 70 myself. And I still work (elder care mgmt and help out / manage all care for my friend who is now 88). This is MORE reason for you to enlist family support - in essence, they may need a 'sit down' THIS IS HOW IT IS and I NEED YOU TO SUPPORT ME to SUPPORT mother.
* While there are many - perhaps life long - reasons for how you feel about others' joys and accomplishments in their life, and how you react with (?) resentment or "poor me" feelings, it will be up to you to train yourself to re-act differently, re-program your brain to feel a sense of joy for them.
- I believe you are reacting this way (towards others' joy, etc.) due to you feeling SO STUCK and feeling no way out.
- Learning to give yourself some 'self-compassion' and 'self-love' may neutralize the 'poor me' feelings that pop up with others' joys (vacation, home buying, etc.)
- Find 'joy' with little things in your life. I did that this morning. Turned on the bathroom water faucet and thought "so many in parts of the world do not have this LUXURY of 'just' turning on the water (clean water). They have to walk xxx miles (?) for clean water.
- Shifting your brain to focus on the little 'gifts of life' requires a mental / psychological effort initially. Often referred to as a gratitude list or gratitude exercise. I encourage you to google GRATITUDE exercises and see what you can do for yourself.
* I believe (some of) your response to others' joy is due to your own fatigue, frustration, possible depression and feeling you 'have to do it all' instead of knowing that you CAN take steps to enlist help(ers), including your children. They will learn GREAT lessons in life by being responsible to help you support their grandmother.
* YOU need to make changes and realize
(1) this is a difficult situation and you can;
(2) you can find joy in little things (I do daily 'just' looking at the trees in my neighborhood - it is an ecstatic experience although I am so attuned to nature / trees, it is an awe inspiring experience EVERY TIME I look at them. Many people do not experience this joy viewing nature.
(3) Feeling joy for others' success and joys will reflect on your feelings inside and be returned to you. In reverse, if you feel 'sour grapes' for others' you will internalize these feelings, 'too' - and you don't want that. . . . a story of support coming next.
"A friend of mine asked me to give him a ride to the airport. I had to be at his place by around 5:30am or some ungodly morning hour. I was there on time. He then said he wanted ME to drive his car to the airport vs mine. This didn't make any sense to me AND I could not drive a stick shift. He ended up asking someone else. I got up at 4:30am or whenever to do him a MAJOR FAVOR which was meant with "thanks but no thanks". I could have remained stuck in my anger and frustration although QUICKLY realized that my feelings only affected me and my well-being / health, etc. I then shifted to forgiveness ... for my own benefit. And, forgiveness is a self-healing tool. The benefit of an other feeling 'good' or whatever is an added benefit. The reason we forgive is for us. LEARN to forgive yourself +realize that self-judgment / self-criticism is hurtful to you. Turn those feelings around as soon as you feel them. I call it 'self-talk'. We must learn to be on our own side and this requires awareness, conscious decision making, practice., and patience.
Gena, Touch Matter
You are quite right, it is much better to forgive and let it go.
I hope he never had the nerve to ask you again, all the same.
Hopefully you can find someone part time who can give you a little freedom now and then. I didn't take my mother in, but I was pretty much tied to providing care for a while (bring supplies or take her shopping and to appointments.) She was about 1.5 hours from where I live, so any days I "helped" pretty much sucked down that day!
I was working full time before dementia started, and that pretty much sucked down my life! The commute was a killer and by the time I'd get home, I'd be done. Weekends were mostly unwind, no "outings" for me!
Just after I bought the place I am now (while still owning the previous house), I got laid off and mom started down the dementia path. A combination of having to ensure her needs were met AND having no funds to move forward with either house, I was more or less trapped! I'm not big into going places. Been there, done that. After so many years of working, raising two kids alone, I was happy to be home and had plans to work on various projects. Lack of money and juggling for mom kept me from my projects or moving forward with either house. I was able to free up some funds to get the other house cleared and touched up, so I could sell it, but by then my free time was locked into providing what mom needed. Finances were also still tight, so it was almost 2 years before that freed up - during that time, I had to spend many days/week clearing, cleaning and organizing repairs on mom's condo so we could sell it (she had assets I protected in a trust and she was moved to MC.) Finally, when the finances were better and the condo gone, I had money and some free time to move forward. Finding people to do the work needed here has been a challenge, but right about that time the virus came along!
So, although my circumstances are different than yours, I have been more or less "trapped" here for over 3 years now. Much of the mom juggling is over now, but still some loose ends to finish up. I still need to find reliable help to get this place finished (six years with a half refurbished place is stinky!)
It will be a help to bring in someone to give you some time off, to go do something you enjoy. Also remember that the grass is always greener for someone else, but that doesn't mean they are happy and joyful! We make our own joy, when and where we can. Perhaps you can try various activities with your mother. You never know what might spark an interest. My mother was also one to sit and read, newspaper, magazines and her favorite - sales flyers! But, I was able to get her into other activities. One that surprised me was working on jigsaw puzzles. She was NEVER one to do that, but I was and she actually would move pieces around, found some that went together and located a few that were needed for a particular spot!
Volunteering - I should think many places have need of people to do work that might be done at home, such as writing up letters, stuffing envelopes, mailings, phone calls, etc. Updates to online data can be done at home. I did the updates to mailing addresses on their laptop and stuffed envelopes for a local cat shelter.
Be happy with today. Be happy with what you have. Don’t waste your life wishing for something else.
Someday you won’t have your mom and it won’t be that NYC apartment that you are envious of, it will be that stranger helping their mother step upon a curb or pushing their parent in a wheelchair.
You are so lucky now and you don’t appreciate it.
Counting down the days until your mom passes? Considering your age then as the beginning of your happiness? If you are not happy now, you will never be happy, no counting backwards needed.
Sorry to be harsh, but you need a wake-up call.
Hearing friends simply going out to dinner or a movie, sounds so great to me right now. Siblings are of no assistance and because of her assets and income limits there is nothing available(trust me I've tried and researched). I do not look forward to weekends because this caregiver role doesn't end Friday at 5pm :)
So what do we do? Research and try to find "mental " escapes since we are limited otherwise. No point in being mad(although you can feel envious) about others who don't have the obligations we do. Do the best you can and really appreciate the "good" days regardless of how trivial it may seem.
I applaud your spirit to seek familiar and satisfaction for your LO, but realize that that is not always possible, and that's OK.
I think you'll start to feel better physically and mentally when you begin putting yourself on the top of the priority list.