Looking after Mum with dementia. Through the past few years I have scarificed a lot, magnified by covid. I have lost touch with my friends, have no time or energy for social life. I’m in my late 30’s wondering if I’ll ever meet anyone, have children, let alone even have time for a date. The only person I talk to is my mum who it’s becoming increasingly harder to have a proper conversation with. My own health has suffered massively, I’ve gained weight due to the constant stress and tiredness, my sleep is all out of whack, I’ve developed asthma and have anemia. 3 years I go I was fit and healthy. I hate the sight of myself now in the mirror, I don’t see the girl I was and want to be. Now I’m at a crossroad of where I’m being forced to make a choice between Mum and my profession. Even if Mum goes to a care facility, I would not be able to see her due to health regulations inevitably and there is 0 other family. I fly overseas for a career and if you’ve been overseas, you are banned from visiting an aged care facility due to covid. This was my dream and I worked many years to get to where I am. I don’t have the same earning potential elsewhere, which would bring further strain. I feel like my whole life has been hijacked if that makes sense and I’m not happy. I keep wondering if Mums dementia is worth me losing all of this, friends, my own family, my health and profession and where I’ll be in 10yrs time, if I keep going like this. I keep looking at others my age moving on with their lives, progressing whereas I am back peddling in every way. Yet the thought of just dumping my mum at a care facility and not being able to see her, makes me feel sick in the stomach as we’ve always been super close. I can imagine if I did that, it would come back to bite me later and then I’d regret that. I really don’t know what I’m meant to do. I have to choose between myself and Mum. It’s like we are both falling off a cliff and I’m holding on to her hand and if I let go, I will survive but if I don’t, we both fall. Only this is not a cliff so I’m so confused! I love her and for now I can still have conversations with her but what about couple of years time, when she no longer remembers who I am,.. will it all be worth it then for me to have lost all the above mentioned? The profession is not something I can drop and pick up again later without starting again from the very beginning,.. it’s built on seniority. I wish my workplace was able to give me further leave but I’ve been given a deadline. My whole life I have pretty much invested for my family, I also have a brother with a disability (in a care facility overseas) and my other brother was sick and passed away 2019. I’ve been worrying since I was a kid for my family and used to think, when I grow up, I’ll finally be set. I used to think then I can finally have all the security I missed as a kid and be free while also being able to provide assistance to my family. Key word being “assistance, not losing all I have”. I feel like my late 30’s are a break it or make it point where I really need to establish my own future or suffer the consequences now and later. Where do you draw the line,.. how do you weigh up all this! It’s absolutely breaking my heart both ways. If it weren’t for covid, admittedly things would be different. I’d be able to place Mum in care and go back to my profession of choice and see her on my days off, all would be well. I will add that these restrictions even apply to home care and respite. I’m feeling a whole lot of resentment and just feel upset all the time. Neither choice will result in a happy outcome.
I feel as though you are giving yourself two options at the extreme ends of the spectrum. Hence, a difficult decision. Stay and look after your mum all the time or go overseas and risk not seeing her at all. Where is the middle ground? No wonder this decision is so hard.
What about not going overseas and putting your mother in a care facility where you can visit her as much aa you want. Then you can reclaim your life. Do you really need to go overseas to fulfill your career? I dont know what you do but that does sound a bit hard to believe in a world full of options.
I would suggest you look for the middle ground here. As from the sounds of things, neither of the two extremes you are contemplating seem to be a recipe for success for you.
Baby steps. .Maybe you can revisit the going overseas thing at a later stage. First reclaim your life where you are now and still be able to see your mum.
Step 1 to me seems to me to be, get mum into a home nearby, sleep, get some rest, some sanity. Eat some nice healthy food, exercise. Talk to friends, go on a date. Take it from there.
My point, nobody knows how long a person will live and the onset of not walking and being completely immobile will not be manageable by one person. A hospital will require two people to care for such a person. That’s with the proper devices and 24hr watch. It’s your decision, but waiting last minute will destroy your mother’s finances and the government will take the house. My advice, do not sign anything. Hire an attorney.
I wish I could offer a magic answer, but there isn’t one.
I am 38 and I understand the crossroads very well. I would encourage you to start looking into options so you can travel, date, and experience life in general. Follow your dream. Give it a shot. If 6 months go by and you are not finding enjoyment, then you at least tried. Your mom will be safe with home care or other living arrangements. Live your life while you can share still your experience with her.
I would like to think that if the roles were reversed I’d encourage my kids to do the same.
A doctor once asked me: “do you want to be a full-time caregiver or daughter?” I said “daughter”. They said, “then it’s time to fine help.”
We are totally on our own here in the US when it comes to caring for aging parents. That is why we are on this forum. Many seniors cannot access the public systems they have paid for their entire working lives. Your life doesn't sound so great if you want the truth. I read your post and a lot of it is projection and fear.
Yes, I cannot understand exactly what your experience is but you don't understand mine. It's okay that you don't. I read that you love your mother and taking care of her is costing you everything and how to cope with a future that is becoming a shadow of what you hoped. Three years ago I was a total b**** to everyone because of my resentment. I received a lot help here on where to go, who to talk too, when to just let things go. What I did not receive was tea and sympathy and "You poor thing". Cappucino42 you must make yourself a priority
or you will be the one who is placed in care.
If you want to sacrifice your life and further jeopardize your health with the health issues you already have by being a nanny-slave to your mother, then God bless you. If feeling self-righteous and superior to others because you sacrificed your life to elder slavery is worth it to you, then good for you. You're an adult and if it's what you want do it.
Why are you complaining here then? Simply telling yourself that mom would do it for you and what doesn't kill us makes us stronger should be enough to fortify you with strength and joy to be a slave 24 hours a day, seven days a week, 365 days a year and be happy about it.
Except it's not enough. You have the resentment too, and my friend it's okay. No one has to take it all on and do it all on their own. It does not make someone a failure as a human being if they bring hired homecare help for an elderly parent. Or put them in AL, or memory care, or even a nursing home. Parents who truly loved their kids and really wanted the best for them growing up (not lip service), don't want to see their adult kids become slaves to their elderly neediness.
As to your question about if I had a child with mental challenges and wouldn't I want to look after them myself. Here's the answer.
No. I would not want to if others more capable than me were could do better than me for the child and were willing to. As for the guilt. loss. and pain that would come from such a decision, I would live with it. What else can a person except just learn to live with it.
It's also love to give up a child you can't care for to give them a chance at a good life with people who can. It's love to put an elderly person in a care facility if they need to be on one. On my last long-term care position my elderly client would have been in some ways better off in a nursing home or memory care. Granted she would not have gotten the excellent level of physical, hands-on care she received from myself and my girls, but she would have gotten some socialization. The only people she ever saw were us and the tv. She was invalid and there's only so much you can do in the home. A care facility is able to provide social activities even for people who are invalid like she was. In some cases home isn't always best.
Thank you for your input. You have enlightened me to the fact that 'you just don't get it'. That someone could Love another human being enough to make sacrifices for them.
You tell me I'm being self righteous or superior to others because I care. That's really laughable.
You judge me but have absolutely NO idea what my circumstances are.
I live in South Africa, I have NO income due to having to take early retirement for health reasons. This is when I first realized that my mom was in the state she was. You don't notice these things when you are not there for 12 hours a day........
In order to seek additional care, it would cost in SA rands R26,000 a month. (I was a business intelligence analyst and was not even bringing home that sort of money). This is without any extra's like medication, etc. The state facilities might be a lot cheaper (which are in the news regularly and not for good reasons, 144 people died in one incident) are shocking. It would be like putting my mom in a concentration camp where staff abuse patience. That's not love.......
My mom and I (remember NO income) pay for the privilege of belonging to a medical aid which costs us a combined R12,500 a month. Yes, we each pay our own. (Before that becomes another point of debate). It is a big stretch and I am sure you can calculate the effects of what this does to one's savings but it's an essential. The medical aid would assist with some of mom's costs but these are very limited.
So that leaves me with only 1 option.
It's about making her comfortable. Life is alot easier when agitation is removed from the equation and this is what I'm learning from people on this platform.
This is not the good old USA (the land of the free). This is a 3rd world country that doesn't look after their aged the way your's does. You should be grateful for that.
My moms best chance is to be around people she recognizes (even if she doesn't know their names), that is caring and that is love and you want to shoot me for it.
It seems that you really have a hang up with people that approach this challenge in a different way to you. This just demonstrates that you will look for any reason to pick a fight with a stranger who is trying to make sense of all of this and find ways to make it work.
I joined this platform hoping to find answers to some of my questions. (And I have). I've, as explained already, have gone through the stages of denial, anger, etc (thanks to the comments of others on this platform and I thank them for their pro-active and constructive advise) and have accepted that this is my life.
I think I have also realised why you are reluctant to understand my situation. You are looking after a 'client' and not a loved one.
Love is not about the big things, it's about the million little things.
I will no longer be engaging with you due to your negative comments however will remain a fan of this platform despite my experience with you.
I prefer to learn from those who have a personal interest with a loved one in their life's journey.
Perhaps it is time for a career change for you. Get out there and follow a dream that will make you happier.
These will be my last words to you on the subject.
Your MIL needs to be told that she's not living in India. That she did not put in her expected years of servitude to her in-laws so has no right to expect it from you.
Holding onto the belief that mom and dad clothed, housed, bathed, and fed us is a big crock of sh*t. This does not mean that they are owed the right to own our lives and make slaves of us because of old age and neediness.
Nursing homes clothe, house, bathe, and feed residents. Except so many of our elderly loved ones want more. They want their adult kids and sometimes grandkids to become nanny-slaves to them. No one owes anyone that.
Remember something please. Our parents got together and created us into existence. It was their choice and I'll bet they didn't give it much thought. I'm pretty sure I owe my own existence to a bottle of chianti, a Led Zeppelin 8-track, and the backseat of a '69 Skylark.
Not one person ever caused anyone's old age or all the problems and issues that come with being elderly. No person has ever caused their parents' neediness either. Certainly no one asks to live in the slavery that is often caring for an elder.
Adult kids should help their parents and even the other old folks in the family. The only way caregiving can be successful for everyone in a situation if it is done on the caregiver's terms. Not the care recipient's. If that means hiring paid help to do the day-to-day and hands-on stuff, or choosing a facility for a loved one, then so be it.
Holding onto the belief that mom and dad clothed, housed, bathed, and fed us is a big crock of sh*t. This does not mean that they are owed the right own our lives and make slaves of us because of old age and neediness.
Nursing homes clothe, house, bathe, and feed residents. Except so many of our elderly loved ones want more. They want their adult kids and sometimes grandkids to become nanny-slaves to them. No one owes anyone that.
Remember something please. Our parents got together and created us into existence. It was their choice and I'll bet they didn't give it much thought. I'm pretty sure I owe my own existence to a bottle of chianti, a Led Zeppelin 8-track, and the backseat of a '69 Skylark.
Not one of person ever caused someone's old age or all the problems and issues that come with being elderly. No person has ever caused their parents' neediness either.
Adult kids should help their parents and even the other old folks in the family. The helping has to be done on the twrms of the person who is helping. That is the only way. Caregiving is only successful for everyone in a situation if it is done on the caregiver's terms. Not the care recipient's. If that means hiring paid help to do the day-to-day and hands-on stuff, or choosing a facility for a loved one, then so be it.
As much as I hear your comments I cannot agree.
Yes, like you, I also feel burnt out and bitter at my situation at times too but nobody chooses to get dementia.
If you had a child with mental challenges, would you not want to look after them? After all that's what this is.....
Well I never had kids but now I have one.
The most loyal, caring, devoted mother in her day.
She deserves the same treatment.
Llfe may not be pretty and smell like roses at the best of times but hey I've learnt that patience, love, humour and humility go a long way.
It's not about me. This is about putting mom first and giving her the comfort she needs because she is vulnerable and lost.
Nobody deserves to be set aside because the job is too hard.
What doesn't kill us, makes us stronger.
Believe me when I say that this is the last thing I expected to be dealing with in my retirement (on top of my stage 4 cancer) but it is what it is and we can either choose to face the challenge or hide our heads in the sand like an ostrich.
I choose to look after mom and sometimes I do it cursing (I'm not the most patient person) and being very frustrated at times but then I know (not think), 'she'd do it for me', she deserves the same courtesy.
Llife will resume for me hopefully when my job as a daughter is done.
You're in a tough spot. If you can take care of mom and feel that commitment, good for you! Still, you have to take care of yourself in order to take care of others. If you don't take care of your health, financial needs, etc, who will? So, its a balancing act. BTW, there will always be critics no matter what decision you make so let go of pleasing everyone - its not going to happen.
You love your mom or wouldn't be doing all this soul searching. Feel good about that. That makes you a caring daughter.
Not all care facilities are bad. Some are horrendous! Its going to take time and effort on your part to find the one that fits your needs and your ability to pay for the services provided. It can be costly. If she needs memory care, increase the cost by at least 30 percent more than the regular facilities. In other words, if a really nice facility costs $6,000 to $7,000 month, memory care will cost about $3,000 a month more. Of course there are facilities for less but not significantly less if you want your mom in a decent home (this is southern CA, btw).
Placing your mom in a facility isn't "dumping" her. Its giving her the best care you can provide while you take the best care of yourself you are able to. But, if you're considering a job were you have to travel a lot, how much time will you be able to give your mom? Are there siblings or dear friends who can help give her the needed time and attention? Or, is there another career you can pursue that will allow you to provide for yourself and still give her regular, loving time and attention even if its to visit her two or three times a week?
Is her ability to self-care such that you can hire someone to come in during the times you are away and only stop in to make her lunch and help with a little housework the rest of the time? Maybe she can be on her own during the day and you can have visits twice a week to help her bath and watch some TV with her? There are so many ways you can offload some of the stress.
Shop for groceries online. Hire a housekeeper every other week. Drop her off at senior day care several times a week. Bring in home care ($12 - $25 per hour). Certainly ask relatives to help with either the care or the cost. There are many resources that can help you.
What you need is a plan. Figure out what's needed and then find the resources. And stop feeling guilty. You can't do it all by yourself anyway. No one can. Come up with a plan that is balanced and shows love for her and for you. Stop feeling guilty for not being able to fix your mom. You didn't make this happen! Do the best you can and let go of the guilt.
BTW, care facilities should be able to provide Zoom visits and distance visits even if only through glass or with a 6-foot barrier where you can see each other and talk to each other. If that happens, order special dinners for her from her favorite restaurant, call her every other day, zoom visit as often as possible, send her little treats and make sure she knows they're from you. There are lots of ways you can let her know you care and even see her even if in a facility. Get creative!
But you cant quit living for her care. You are not a nurse. You had the difficult situation of 0 family. So time to let professionals take her care.
If your Mom is like most, she would not want you to lose it all just to take care of her.
The Covid restrictions are being lifted everywhere. At most a negative testis required to visit loved ones in a facility.
I would place your Mom close to your Brother’s facility overseas. Save you a lot of work.
You have given more than your fair share to her, but you have to save your career and your income while you still can. Please do.
20 years of dealing with a senior with dementia is more than anyone can be expected to take.
Find a nursing home or memory care for your mother. You don't owe anymore.
I am burned out, angry, resentful and hate my life.
Your mother should not have 5 caregivers. For what that must cost your mother could be in an asissted living community. That is ridiculous and complicates a situation unnecessarily. There should be no more than three who either split the 7-day work week or work in rotation one week at a time.
Also, your mother's money is not your inheritance unless she leaves it to you. It's her money and she can spend it as she pleases. She's paying for her care with it. You could help her save a little bit by cutting her care staff down.
1 - Get help for mom. You can not care for her alone. You need others who will care for her and know the types of care she needs. If you can not find enough volunteer help through family, friends, members of your faith community... then you must find paid caregivers. Consider adult day programs (Monday - Friday days), sitters and home health aides round the clock if mum doesn't sleep well at night, and residential facilities. Please use whatever funds mum has as well as government and community resources. The goal is to make sure she is adequately cared for and not create financial hardship for yourself.
2 - Get help for yourself. Go see the doctor for a thorough physical, Get referrals to a nutritionist, physical therapy or trainer at a gym, and any others to work on restoring your health. Meet regularly with either a support group or a counsellor to deal with the emotions and issues that need resolution. Realize that this journey back to health is a marathon and not a sprint.
3 - Get back the parts of your life you lost. Go to work somewhere; COVID changed work for so many people and your career may have changed too. You won't know unless you try and also investigate other positions that don't require travel. Reestablish friendships and make new ones; this means getting out of the house with and without mum and talking to others. Get some "time off" from mum to enjoy activities with others.
A good adult child makes sure that his or her parent is cared for, even if it means not doing all the caregiving yourself.
You need to live for yourself.
If you posed this question to your mom 10, 15 years ago what would her advice have been?
I am sure that your mom would not have wanted you to pass up on career, opportunity the possibility of a family to care for her. I know I would not want a child of mine to do that.
You are a 30 yo who needs a career to pay the bills and build wealth. Unless you’re a trust fund baby, you really don’t have an option to just quit. The line is already drawn. It’s just heartbreaking to accept that you can’t stop your loved ones from hurting.
You can test a new road. Help mom gets the assistance she needs and call her. Expect mom to be unhappy when she talks to you (change is hard) but watch to see if it’s a guilt trip con. Apparently my grandfather complained to my mother about the AL center but she found out he had a lady friend and was quite social.
If you don’t take care of you, you may grow jaded or bitter. What kind of life is that? One without friends (because who wants a disillusioned bitter friend)?
Not having gone after your dreams? Or not being a Super Hero and looked after your mom for longer than you did?
Put your mom in care. You’ll have to eventually anyway. Do it now so you can go after some of those dreams. They’re important, too.
Talk to which every home you put her into. Maybe you could do window visits, or they have partition visits. You won’t know for sure the restrictions until you speak to someone.
If I were in your mother’s shoes, that’s what I’d want. I’d want my kids to go out and make the most of their lives. To not have regrets. To live as big and as happily as they could because we only get one shot at this life. I’ll be fine wherever. I’m a survivor. I’ll make it work. But I don’t want to be a burden on my children, preventing them from living the fullest of lives. I doubt your mother, in her right mind, would want that either.