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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.

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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 21, 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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Oh my dear. I feel like I'm living proof of "misery loves company." I have pulled away from friends who seem to be "living the life." There is a huge wedge between my sister and me. My mother has lived with me for the past year. She is 96 next month. I am 67. My sister takes her every other weekend. When she came to pick her up last weekend the first thing she said to me was that she would be going on vacation for two weeks in September and wanted me to know ahead of time.
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.
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Catyduke May 23, 2021
Dear Beatlefan,
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.
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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 20, 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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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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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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Reply to NeedHelpWithMom
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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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I'm right where you are. You are not alone and please keep sharing when you need to because it does help. I'm 52 and my 85 year old mom was diagnosed 4 years ago with Moderate Alzheimer's. She then moved in with my wife and I while we still have one of our 6 kids living at home with us as well. My wife and I had actually just gotten married when this happened and this situation hasn't really helped in that department. I feel alone most days. The first couple years were ok actually. My sister who lives close was willing to help and take her on occasional weekends. That ended in the last couple years though.....as her life became too busy for mom. I've been feeling like you lately and resentful of my siblings and jealous of friends who can just go wherever they want. It's an up and down battle with emotions for sure daily. I find meditation, writing, walking and exercising in the morning before she gets up, and occasional dinner with friends to be helpful. Financially we can't afford to put her in a good home either and it's not what she wants. I hope in the future I can just bring in the respite care offered by the county here as needed to give me break and help in those final stages. I know that I will miss my mom of course someday and I'm grateful to be able to care for her now because she is and always will be the kindest woman I know, but that doesn't change the way we feel on this roller coaster of care giving while we're in it. As everyone else is saying....be kind to yourself and reach out for help where you can. Enjoy the small things for now and know that you will be proud of yourself when it's all over for doing your best. Please continue to vent or ask for advice on here whenever you want to and just scroll past any negative comments. ;)
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CammyR May 23, 2021
Your response is spot on. Keep fighting the good fight.
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I do not know. I just live day by day and my own health is going down hill due to stress. I did get out yesterday, my daughter took my wife overnight, I went into NYC and so many elderly people on the streets who could barely walk or in wheelchairs but still getting around the city. Dementia is different. I do not know how to deal with my LO’s dementia which now is severe. My controversial opinion is that we are living to long with ill health when it involves our brains dying. It makes no sense to me.
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Tireddaughter2 May 23, 2021
I agree Elwood. Nobody is enjoying themselves.... not you or your wife. I am a firm believer in voluntary euthanasia which should be a discussion we are having before dementia sets in. We all face this dilemma of not wanting our loved ones in a facility but struggling with the isolation of caring for them. I use VC a gratitude app which helps but it is really tough sometimes and at least hear we can empathise with each other. Don’t feel guilty if you need respite. You need it for your sanity.
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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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I take solitary times to read the Bible and listen to what He will say to me.
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