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.
You’ve read all the other replies and some are much better than I can comment, but being on this site certainly does let you know you are not alone in the feeling. Even if it’s a temporary state of mind, it still probably runs across all of our thoughts once and awhile. We are human and humans have these great minds that process everything, “good” and “bad”. Being too positive can be just as harmful as being too negative and some days the balance isn’t possible. Finding the right place for your own mental peace is challenging even when you get all the “right” advice.
I know caring for my father was and is my choice and I try to remember that when I’m resentful towards my siblings and other family members that are “grateful” I’m caring for him but give little thought to how much it can hurt to see a loved one deteriorate a little every day. Or maybe they do think about it? I’ll never really know because they have difficulty expressing themselves. All I know is that some days I wonder when I’ll get my life back, and then I feel the punch in my stomach that reminds me it’ll be sooner than I think. I do still have that stab of resentment when a friend says they’re going camping or out of town for a long weekend or whatever, but I clean the wound with the reassurance that my conscience will be clear when my father is gone and at peace, knowing that I did everything I could to help with that. And yes, I remind myself that my unhappiness in the moment shouldn’t block the happiness of others who need their joy as much as I need mine. I try to not steal anyone else’s sunshine; I just have difficulty making my own some days. FYI I recently heard there are 42 million of us caregivers just in the USA.
Perhaps your mother is bored and could use some friends of her own. Can you help her develop a social life? If she has dementia, there are daycare programs. Why can't your husband and children take care of her if you want to jet off to visit a friend in NYC?
Everybody isn't as carefree and happy as you think they are. And 65 isn't a bad place to be if you have taken care of your health. At least you are not alone.
She is always on the phone to my sisters and her grandchildren but does not want them to visit her at home, and does not want to spend time with them unless I drive her to meet them. I cannot stand my sisters but I can't abandon my mother as the guilt would kill me. So I am hoping for a full reconciliation between them so I can reclaim my life.
My mother is 81, healthy and sociable, but she is very emotionally dependent and passive-aggressive. I can't hold down a job because she always has some crisis that demands my time. She is able to drive and has her own car but expects me to drive her to the doctor, the chiropodist, the dentist. The only time I get any respite is when she goes to the shops (she likes to browse without me) or the church (she goes every day and only insists I go with her on Sundays).
I am single and have no children so I think the other members of my family see me as the one with the obligation to sacrifice my life for my mother.
For one if you get disabled, like I am, you may not qualify for disability unless you have so many social security credits in the last 10 years before claiming disability.
As a single person,!your own social security payments will be negatively impacted. Your mother will be dead and gone, and there will be nobody to turn to for financial help unless your mother puts in writing and video that she is leaving you a large inheritance when she dies.
Your mother is able to drive and get around and can call Uber if needed. She is ambulatory on her own.
I cannot stress enough yo you that you must take care of yourself FIRST! If your mother was born and raised in the USA, trust me she already knows or has friends who are in assisted living, who plan to step down into the Nursing home when the time comes. She can also expect the same unless your siblings want to step in and take care of her.
My well to do siblings don’t care what happens to me. They did not want any part of helping my mother while she was alive and she was a fantastic mother to all her children and made great sacrifices for them all, even moreso than me.
Please heed my advice for your sake and become self sufficient and draw very distinct boundaries with your mother once you have a job and secured an apt or house of your own. She will be fine.
Do not let her or your siblings guilt trip you. Like you, I was the only single sibling and they used the same excuses to guilt me in taking care of my mother. You must get the mental strength to create your own life as soon as possible.
Back in the days if she were in India, she might have other children, cousins, nieces and nephews to help care for her but this is not back in the day and it's not India. Having just come from India and being older she may be in a bit of cultural shock that is not helped by her dementia. In NJ we have several adult day care centers that promote Indian culture (observe Indian holidays, serve Indian food and speak several indian languages); we also have a number of LTC homes that cater to our diverse population. Yes, they have to paid for out of pocket but that might energize your Mom a bit and might give you a little time to yourself.
In terms of how you are feeling ... you just kind of have to bit the bullet and go with it realizing that your children may be in the same position and feeling the same way in 30 - 40. You don't have a crystal ball to look and see when your neighbor's life may change for the worse but know that it might. Life is a tunnel that is not always fair but those who survive and come out the other end do so with determination and grace. It's alright to feel bitter and a little jealous occasionally but be careful those feelings don't consume you and change your personality for the worse. As we live longer, most people whose parents are deceased go through the long agonizing process of trying to care for them and even when the parents are placed in a facility you still have to monitor and "care" for them. We may not like it but it is part of life.
I wish you peace and tranquility in your journey wherever it takes you.
Hang in there we all understand what you are going through and it is not easy. Just know you are not alone.
You can be our scout!
May I kindly and emphatically suggest that you need to enlarge the group of people caring for your mom. Ask family, friends, members of your faith group, and even paid help to give you some more free time weekly, daily time off would be even better. You should have a few people who know your mom's routine well enough to care for her for an entire day and an entire weekend. It is not so you can just "go out and play" (which you really need) but also so others can care for her if you are sick or need to be in the hospital.
There is no easy solution. I have finally decided to get into therapy to help with the emotional roller coaster I have been on - resentment, anger, self-pity, loneliness - you name it I've felt it.
We are called to serve others. I try to focus on that when I'm having a difficult
day. I also know this will end and I don't want any guilt or regrets.
We caregivers do the best we can with what we're given. Be kind to yourself and know you are doing what you have been called to do.
Try to find those activities you enjoy - reading, listening to music, walking, gardening, painting, crafts, sewing..whatever it is that brings you pleasure- find time to do it. I spend a lot of time in my yard.
This is a great place to come and vent, ask questions and get support. It helps to know there are others who know exactly what you're feeling and going through.
God Bless you. He sees you and knows.
I’m glad you wrote this. I sometimes feel like nobody cares. My younger son lives with me and my husband. My husband and I have been together 6 years however he has 3 sons and I have 3 sons. I have not seen my 2 oldest sons in over 2 years. I miss them. My husband has only seen his mainly when we went to visit. He’s in the severe stage of dementia so he no longer mentions going to see them.
Anyway to get back to what I was saying, my youngest son stays up at night and sleeps during the day. My husband sleeps more and more so that leaves me to try to take care of everything. I’m tired.
I have respite and my brother does what he can in the yard but he lives away.
So I truly feel alone when I know I’m not.
One of the things that helped me was to realize that my feelings of sadness were feelings of grief. Dementia is often referred to as the long good-bye because the person we love is slowly disappearing, in ways unpredictable - and difficult to tolerate at times.
Lots of good suggestions here; I hope you can find something that helps. Yours is not an easy journey, so please remember to be gentle with yourself.
1. Yes, you do need to take care of yourself, and people have given you a lot of good ideas below. Some you may be able to do, some not. But create some mental and physical time for you every day.
2. Although it may not seem like it now, this situation will not last forever. I know. I looked after my mother and father for 20 years with fortunately the help of some wonder sitters. I was either taking care of their financial matters, their physical well-being, or both. I maintained their .77 acre yard with little to no help. All my sweet, precious daddy wanted was to live out his last days in the family home surrounded by his memories and I wanted to do that for him. All my family is gone now. My mother, my father and my brother. I’m so glad to know that I did for them what I did. Was it hard? Absolutely! Did I feel loneliness and frustration sometimes? Of course! But now as I look back, it seems like it all went by so quickly. One day you’ll likely be looking at that same chair when your mother goes wondering where the time went and wishing you could ask a question or see her smile.
3. See if you can find a help group in your area of people going through the same situation and learn and share with them. Google groups in your area and check with your local aging commission. They may have some resources for you as well.
I wish you all the best.
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.
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.
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.
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.
* 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.
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.
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.