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flowermcv Asked October 2018

Live your life your way, or live your life for your parents?

My mom has severe Alzheimer's disease and separation anxiety from my Dad. My Dad no longer has the energy (or desire) to take care of her with her constant nagging/fighting (sometimes violent). My sister and I have been supporting them financially and physically for the past 10 years. My sister has to move away for her family 2 years ago so I moved closer to my parents for a year now.


We have been trying to get them to move back to their home country where we have relatives who could help them physically while we work to support them financially. I have been living apart from my partner trying to take care of my parents while holding a full time job and hoping that they will change their minds so I can move with my partner to another country to grow old together.


I now have to choose my parents or my life. I don't know how to leave my parents knowing that they won't survive by themselves but I can't live a life that I hate every minute of it. How do you deal with the dilemma? To live your life the way you want it vs. to live your life for your parents knowing that you hate every minute of it and will break apart eventually? Has anyone been in the same situation and any advice you could give? Thank you very much for all the advices!


 

polarbear Oct 2018
If you're waiting for your parents to voluntarily tell you one morning they will move back to their home country so that you can live your life, then don't hold your breath.

As I have seen again and again on this website, most elderly and sick people just can't think beyond their needs. They just can't. Everything is about them. Everyone around them is there for their needs. They won't see that they are putting a big burden on you. They won't see that they are ruining your life. They won't see that they are literally sucking the life out of you.

YOU have to take control and make the arrangement for them to move back home, make arrangement for your relatives to take care of them while you work and send money to support them.

It's easy said than done, but it has to be done or you just have to put your life on hold and wait until they die.
flowermcv Oct 2018
Thank you very much for advice! It is to get over the guilt and accept that I can't waste my life any longer. It sure is easier said than done.
MargaretMcKen Oct 2018
You have quite a normal problem, just made more difficult by age. Anyone who migrates to another country chooses to ‘live their own life’, and it will always be at the expense of their relationship with their parents. My daughter was away in Europe for several years, and I did not expect her to come back to Australia. Her husband left his parents behind in Ireland, my first husband was an only child and left his parents in London. It sounds from your question as though your own parents themselves left their families behind somewhere. When you are young, it doesn’t seem so bad, but the end result of migration is always hard on the ones left behind, and they always age eventually.

At present your parents aren’t facing the problem, because you are there. Perhaps when and if you decide to go, they will make a different decision themselves. It's never easy, and you have my sympathy.
flowermcv Oct 2018
Thank you very much for reminding me that we all leave someone behind when we migrate and somehow we all survive. Yes, I am hoping once I am gone, they will see things differently.

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polarbear Oct 2018
Hi Macrogirl- your life sounds so stressful. I am so sorry. You being Asian, yes I understand, Asian culture dictates that the elderly have to be taken care of by their children until they die.

A few generations ago, that was not a problem because most elderly got sick and died soon afterwards, perhaps within a year of being sick or in much less time. Now, thanks to modern medicine, most diseases can be controlled, so their health deteriorates slowly and painfully for years and years and years while their children sacrifice their lives to take care of them.

For most of us, that means no social life, so friends, no privacy, no vacation, no breaks, no paying job other than stressful care giving 24/7. After awhile, we are no longer the persons we used to be. We lose ourselves, too. I bet your mother didn't have to take care of her own sick parents for years and years like you're doing for yours.

If and when you decide to put your mom in a nursing home, that doesn't mean you abandon her, that means she needs professional care that you can not and are not trained to provide. Same reason you don't try to extract her teeth or provide other dental care because you're not a dentist (I'm guessing you're not ;D.) If any relative judges you, they haven't walked in your shoes. Those who have will understand completely.

You asked about my situation. My mom has Alzheimer's and she lives with my family. She drives me and my kids nuts. Now, they can't even stand being in her presence. We have no privacy because she keeps coming and barging into our rooms, and if the doors are locked, she will knock until we open the door.

She is at the stage where she takes and hides things whether those things are hers or not. The kids get so furious with my mom because she keeps taking their stuff and hides them in her room.

Everyday I have to take her out or have someone take her out at least twice a day for a few hours. In between, she keeps asking and asking where and when I go out so she can tag along. It's just so frustrating and exhausting. I am so tired of her.

And when we out, she keeps reading street names out loud and asks me to acknowledge her. "That is Magnolia Street, am I right?" or "Isn't that a pharmacy over there?" over and over and over again every damn time, day in and day out. I am so sick of hearing her talk. It's like Chinese water torture. Drip drip drip until you go insane.

My kids, husband and I rarely go out together anymore because usually I have to stay behind to keep watch on her. When I need to take my kids out, I have to pay someone to stay with my mom. It gets expensive after awhile, but I am glad my mom has money to pay for some of it. Without those breaks, we would go crazy being cooped up in the house with her.

My plan is to keep my mom at home until she either starts to wander and gets lost at which time she needs to be in a memory care, or when she becomes incontinent because I can't deal with diapers or when she becomes just too much to handle.

Microgirl - take care of your health, physically and mentally. Don't feel guilty if you want to reclaim your life. If you or your mother can afford some outside help, do so. You really need some breaks.
Macrogirl Nov 2018
Dear Polarbear, what you wrote here is so true. And I feel the same way- it's exhausting frustrating. I am, too, tired of my Mom. I am sick of hearing her talk. I am sick of hearing her voice.

I go to her home and can't stop yelling at her. I wasn't like this in the beginning. But after 1.5 yrs, my nerves are fried.

Where are the robots for the seniors? Can't be soon enough.
HouseMom31 Oct 2018
Its sounds like you have given up an extraordinary amount of time, effort, and energy into caring for your parents. I did the same when my
MIL was diagnosed with Multiple Sclerosis. My husband and I sold our home and moved out of state to save his parents whom were about to file for bankruptcy, had diagnosis of MS and dementia, not caring for themselves, and had declined so severely and were unfortunately too unwilling/stubborn to let home health aids into their home. What transpired in the next year of caring for them almost cost me my marriage, pets, and my health. Life was so unbearable due to caring 24/7 for a person who was constantly trying to fight us, and demeaning us. Luckily I was able to convince my Husband to get out with me. Now, 6 months later, we are rebuilding our lives. I can without any doubt say, you MUST care for yourself above anyone else. It sounds like you have already given up a ton to help your folks. That is admirable, but there are much better options. Please don’t do what I did.

Macrogirl Oct 2018
Flower mcv, You are delusional if you think you or any of your UNTRAINED relatives can handle an Alzheimer patient- a severe Alzheimer patient- as you stated.

Any mental illness is bearable- in the beginning stages. But late/severe stage patients need to be separated from normal people- because the patients are beyond every day tolerable stages.

Extraordinary people will stick it out and care for the parent until the Alzheimer parent dies.

Do you think you are that extraordinary- meaning you have the skill, patience, HEALTH, STAMINA, & MONEY to be immersed in Alzheimer scenario?

Your father is a wimp. A spouse is his responsibility, not the children's. Especially when your Mom is so attached to him, emotionally.

I don't know how old you are. If you make a good income, you are better off paying an Alzheimer care facility. If your Mom's old country is cheaper than USA in care facility rate, then that is your answer. Money speaks.

First thing you should do is to google " dementia alzheimer support group near me". And get your ass to weekly support group meetings. All these questions you are asking in this forum- questions like yours is nothing new- are common run of the mill topics that a support group and facilitator addresses.

My dementia support group is a God-send. It would be too costly to go see a private shrink- just to deal with (Alzheimer) parent problems.

I am in a similar situation and your posting caught my eye. I hate every minute of the stress my Mom gives me. Mom ruined my health. It only took 3 months to see how care giving stress has given me a heart palpitations. I used to think "stress" was for mentally wimpy people. Boy, this stress stuff is REAL.

Think about this. I said to myself " Are you going to go to Mom's grave and complain? and say " Mom, look at me. You caused a blah blah health condition just because I was your caretaker. Did you know how hard it was to be your caretaker? The stress you gave me? I sacrificed my time and health for you. You burned me out. Can you give me some money for future medical costs?"

Mom won't be alive.

What Polarbear said, in this forum, is true. So true. Well said, Polarbear.
sudalu Oct 2018
Or maybe mom will be visiting her grave. So many caregivers die before their wards. The elderly have lived their lives. Now it's time to live yours.
Hugger1 Oct 2018
Caregiving for a parent with Alzheimers is EXTREMELY difficult. Having witnessed a close friend care for his Mother right after he retired. He was in his 50's, she in her 70s. His sweet mother lived 1 mile away. They were extremely close and there was no question, he would be the Primary caregiver. She had memory loss but could still dress, do her make up and manage pretty well. He cooked for her and checked on her morning, noon, and night. There were mood swings on occasion and her wanting to swing at him. Medication helped that. She then started to wander and showed up at his front door at 4:30 in the morning ready for breakfast. She had walked across town in the dark with her dog. She then started walking around without clothes. Then fecal incontinence and her unable to clean herself properly. At that point, he had to put her in a Nursing Home. She then wandered out of the facility one night. So then it was on to a facility with a lock down wing. As the disease progressed, she could no longer walk and was confined to a wheel chair. Then unable to speak - just babbling. Then silent and slumped over. She died after 5 years of caregiving. Two years later, he was diagnosed with kidney cancer which was early stage and he had surgery to remove the kidney. He has ongoing blood pressure issues, and his health has declined.

It takes 24/7 care and more than you can possibly do yourself. Some cultures, religions, etc. feel the only way to care for elderly parents is to sacrifice and keep them at home. I strongly disagree. Please get your parents into Assisted Living or see if they qualify for government benefits. Go live your life while you are healthy. Do not feel guilty.

dluckey Oct 2018
I feel for you...My mom is 90 with health issues and Dementia stage 5. My husband and I moved her in with us in June after her neighbor found her wandering not knowing who, where, or why she was. She was a business woman and had a long term care policy but once she started to decline in her 70’s she stopped paying it and wouldn’t let me do anything with her affairs until the last couple of years. She spent her money so now she gets social security only. We have a caregiver during the day and home health as well however, night time we aren’t covered...my mom so far is seeet and easy to manage but she is starting to roam at night so we don’t get enough sleep. We both work from home but with all the people coming in and out it’s impossible to concentrate on my work so I have to leave the house to Starbucks to get any work done. I love her dearly let’s be clear on that and want to do anything g I can for her and my husband is amazing but we have only been married a few years and us like yourself have put our lives on hold. We have family but no one offers or wants anything to do with helping us. I battle guilt as well with wanting my life back...we are 52 and want to live life but that is impossible at this point. I keep telling myself we will manage her at home until we can’t any longer. Hugs to all of you dealing with this financial, emotional, and psysical burden.

JoAnn29 Oct 2018
Just skimmed over the posts. Where are your parents now? The US? Do they qualify for Medicaid or can they private pay? Do you realize sending her back to her home country may make her worse. You are taking her away from the one person she clings to and all thats familiar. Do you think its fair to family members to take on her care? Are there facilities in that country she can be placed into?

No, I don't feel Mom is your responsibility totally. Just think there are options. I can see where Dad needs a break too. If Mom is showing violent tendencies she needs to be evaluated in a Psychic facility where they can monitor her closely for meds. Once they find the right combination, she can be released to a LTC facility. She needs to see a doctor who can get the ball rolling.

MargaretMcKen Nov 2018
In many third world countries, the only elders who in the past survived into very old age were likely to be very well off. Most of the care was actually done by servants. In this culture today, the 'servants' are the staff of a care facility. You can 'oversee' it, in the same way that a wealthy daughter or daughter-in-law would oversee the servants in another culture. No-one has ever been able to do it all themselves. Please think of that way for yourself, and to explain it to your parents and relatives. Best wishes - living between different cultures isn't easy.

sudalu Oct 2018
You can't make them get on a plane or ship and go back home, especially if your father no longer wants to take care for your mother. Can you tell them it's a vacation for them that you and your sister put together? One of you may have to physically take them to their home country and return without them. Are you certain the relatives there will stand by their offer to take them in once they've made the trip. This sounds iffy and could backfire if all the details haven't been worked out ahead of time.

You deserve a life of your own. If the plan for the distant relatives doesn't pan out, have you looked into Medicaid or government aid?
flowermcv Oct 2018
Thank you very much! we have a caregiver to help out for the time being but with my Mom's loss of memory she fights with any care a stranger gives her. My aunts are all aware of the difficulties of taking of my Mom with Alzheimer's. The plan is to hire a caretaker to help out besides our aunts' help and we are visiting often.
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