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I’m a 65 year old woman who is caretaking for a 70 year old disabled husband and a disabled 41 year old adult son. The adult son lives in our second house about 10 miles away with his two adult brothers but I visit and supervise him in his home twice a week . My husband can take care of his personal needs with my support and is able to stay home alone for several hours.
Over the past four years I have also had to intervene for my mother who lives several states away from us and was suffering from two kinds of Dementia. I brought her to live with us for a year, while juggling husband and son. I had to get legal help to become her POA and Will Executor, so that I could sell her house to provide for her needs.
I am healthy but lonely and depressed. I am a retired professional but feeling like I have no life. My husband cannot travel, and I need a vacation. I’m living life as though I’m 80 instead of 65.
The one good thing is I live on an island with the ocean just a few blocks away…. but even then, I don’t get much chance to enjoy it.
Two of my closest life long friends are no longer able to support me. One just lost her husband after 30 years of caretaking and the other is 70 and not functioning as she once did.
I know that a support group is an option but honestly I just want “my life” back.

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Welcome to the forum Ann! You have too much on your plate to juggle, really, so it's no wonder you're depressed & lonely considering all that's going on. I read on your profile that you're planning to sell your mother's house & get her into Assisted Living, which is a great idea. Is that happening some time soon I hope? In the meantime, look into respite care in an Assisted Living Facility for her and perhaps for your DH as well, for a two week period of time, so you can have the house to yourself & go to the beach every day to rejuvenate yourself! We all need that; downtime for US where we're caregiving for nobody.

My own DH is having health issues too so I'm not sure that I'll ever get my life back as it once was. Things change constantly, and even once he's on the other side of his health problems, I'm likely to start facing some of my own. I think we have to look into creating a new 'normal' for ourselves once these health issues kick in, you know? Carve out time for ourselves where we pursue hobbies or interests, join support groups to make new friends, etc. Otherwise, we can easily get buried in the muck & the mire of the CG role to where we ourselves are lost souls. My own mother is 94.5 with advanced dementia & living in a nearby Memory Care ALF (thank God), but as an only child, she is my responsibility 100% and that does take a toll on me as well. Just last week I was at the ER with her for the standard 4 hours that's required each & every time the ambulance is called. It's not easy being 64 myself & having all this stress, that's for sure! I always make sure to de-stress by watching mindless nonsense on TV & coming here to AgingCare to post & read, in addition to pursuing my hobbies.

Wishing you the best of luck carving out your new 'normal' in the midst of being a caregiver to so many loved ones.
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Slartabart Aug 2021
Leolonnie,
Excellent post. A “new normal” is a great phrase to encourage— like “reinventing”oneself, and that CAN BE exciting! But lives are clogged with details, which we readers are not aware of, still, a spark of hope and direction can be such helpful things in lives of isolation, duty, and loneliness.

Nanny ann, one step at a time. One problem solved at a time. I like to write a list of goals with a rough priority and timeline for achievement. It helps me to feel more in control, even if I am not! I re-write the priority times and goals as necessary. I look at them weekly. It helps me.

I am a bit isolated, geographically. Are you? Are you interested in connecting with more social supports? It’s surprising what you can come up with once you prioritize some of your own needs. You must. Make it a research project! That could be so fun!
Again, I know few details of your community resources, and only YOU know what you’re up for. I’m a few yrs. your senior, and I refuse to let go of this notion that I can sell my pecan caramel rolls at the Farmers Market. Not this year, but next year. They are superior!! FUN! Then, maybe,…… Ha! Grab it, girl. Now!
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The only way you can keep yourself from being swallowed up with caregiving, is if you make yourself a priority too. That can be easier said than done, but as you are finding out, it's something that MUST be done, if you are to survive the journey. That is probably the number one mistake that caregivers make and that's to put themselves last, when they should actually be first. You can not give proper care to someone else, if you yourself are not being taken care of. It's like trying to run your car with no gas. It just won't work.
So, please start doing little things(to start)like going for a walk to the beach on a regular basis, sit outside and enjoy a nice glass of wine by yourself or with a friend, meet a friend for lunch or supper, go to church, and definitely find a local support group for caregivers. You deserve it.
And there's is always respite for your husband, so you could get away longer if you really want to. I wish you the very best.
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You do have a lot on your plate. Lots to balance & do but not enough coming back to restore you.

You mentioned the beach is a place you can unwind? What about other things you enjoy, help you relax?

In order to build more of those into your daily life, what would you need? Besides more hours in the day of course!

If you had a regular respite person to your home & also to visit your son, eg 1 afternoon each would that help? What home help services are available to you where you live?
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Oh my poor Honey. You have what we call “one hell of a full plate.”

With all this running around looking after everyone else, who’s looking after you?

I STRONGLY suggest you hire a support care worker for either your husband or your son. We just hired one for $30/hr for 3 hours a day twice a week. Imagine what you could do for 3 hours? Go shopping and ENJOY it. Go to the beach with a book. Go and get a massage. YOU DESERVE IT.

Don’t think of it as an unnecessary expense. Think of it as a down payment for positive mental health and happiness.

Neither your son nor your husband want to be weights attached to your ankles, dragging you down. And, they’re really not. You love them, of course. But everyone giving giving and giving goes until there’s nothing left to give, and that’s when the scary happens.

Do yourself a favor, if only once a week, and get a 3 hour break. You’ll thank yourself for it.
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bundleofjoy Aug 2021
dear liz :),

hug!!! you seem like such a nice person :).

hugs nannyann!! courage!!

i think there are truly wonderful people on this website. i give everyone huge hugs, and wish us lots of peace and luck!! one needs some luck too!! :)

bundle of joy :)
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I am so deeply sorry that you have so many for whom you have to caregive. It's a nearly impossible burden for one person. Could for a weekend or even a day one of your sons look after your disabled son while one son looks after your husband? Is your mother still living with you as well?
Unfortunately, I don't really see a way out of the situation. Caregiving is giving up your life.
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I found this was a lonely life and no collaboration. I was the decision maker and so I got mom a friend. I searched on Facebook for a nurse/LPN/CNA and found a facebook site for nurses. I messaged the administrator and was happy to get a RN who came as a friend for mom. It is wonderful. They do mani/pedi, have lunch out or just watch movies and visit. My mom had hired a LPN for my dad before he passed several years ago and that worked out wonderful. Her LPN was a male and my dad enjoyed the time with him; also Brian was an excellent cook who enjoyed making new dishes upon request. What I had found was that the literature for demention/ALZ was that self care is good for the caree and the carer. So, no negotiations, no advanced notice, just a routine that imprints all is good and she is safe. I know I am blessed/fortunate that mom is compliant and prayers for her and me are daily/moment by moment. When she went to assisted living for a temporary stay of 2 months…she liked it so much she is still there and my life of a full time caregiver has changed to peripheral.
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AnnReid Aug 2021
Beautiful post.
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Some things that worked for me, with hopes they will help or give you ideas that work for you.
1. I take virtual "trips". Still remember the wonderful "visit" to the Taj Mahal I had just a few days ago. Google virtual tours and you'll be able to go (sort of) anywhere.

2. I asked myself what I would be doing differently if things were different. Startlingly at first I could only think of the typical -- sleep later, etc. But then I ran out of differences and realized I didn't have any real plans, other than thinking things would be different. As I started to identify those things, there were some I could move into my life right now.

3. As I watched my LO's move into very old age (97+) I could identify things I am changing right now to make old age better than it would have been without those changes. Many of our parents etc. did not get that option.

Wishing you the best!
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I'm sorry to hear that you're struggling. I can definitely relate. Without getting into details, I also have absolutely no life whatsoever. It has been 3+ years as a full time caregiver while also working (remotely) full time, with little to no help. Lots of helping with Dr. appointments, finances, mail, meal prep etc. for several years before that. I'm in a very dark place. I've tried many times in many ways to get help. My aging parent refuses to allow outside help and my siblings also refuse. It feels surreal. Every day I say I can't make it through one more day, but every day I do. You are not alone. I just encourage you to keep fighting for your sanity even if it's baby steps.
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LilyBear Aug 2021
I can relate to your post. I also have a parent who doesn’t like strangers and insists I do everything. Luckily, I found a service and he took to one care giver, and she’s the only helper he’ll allow in the house.

Several months ago, the sheriff arrived at my door to investigate me for elder abuse. My dad’s dementia was worsening and he thought I was stealing from him. My brother got involved and the phone call to the bank spurred on the investigation.

I was upset and angry. In tears I called my sisters and told them, “I quit! Where do I send his file?” That woke up all of my siblings and they have been more helpful. I’ve asked my husband to come with me on visits because my dad behaves better when he’s there. I’ve also shortened my visits which has really helped. I now keep my phone off so I don’t have to deal with my dad’s nasty calls. When he leaves me a nasty message, I send it to my sisters and someone other than me will deal.

I told my stupid brother, who believed my dad’s accusation of my theft, that he was welcome to the salary my father pays me. All he has to do is move in with him and do everything for him that I do. I will gladly step aside. He demurred.

ive spent the last 20+ years of caring for my mom, then my mother-in-law and now my dad. I’ve finally retired and wish to better enjoy my life.

Take a stand with your siblings. If they won’t help physically, then they need to pony up for you to get more respite care. When I talk to my therapist, he always asks me what Self care measures have I done this week.

Please, take the time for yourself and make sure you do something you enjoy every day.

all my best
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I hear your pain. You want a return of what "was" and are apparently dealing with a less than ideal "now."

A support group might be good to help you discover others' techniques for dealing caregiving and self-care.

You could also try:
1 - Make a list of what exactly you miss from "before"
2 - Gather more caregivers into your life situation: family members, friends, members of faith community, and paid help.
3 - Consider if you are getting enough "time off." You need "essential time off" to get 7-9 hours of sleep, 3 healthy meals at a reasonable pace, time for your hygiene and medical needs... You also need "social time off" to engage in activities you enjoy with people you enjoy. "Social time off" should be a little bit daily with extended time weekly and monthly.
4 - Since you seem to need others to engage in "social time off," check your local paper for activities, online groups, meet-ups... I am a Christian and tend to make new friends through my church. Maybe checking out a place of worship regularly could lead to you finding new friends as well.
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You need to hire help and take a much needed vacation.

Care giving is hard enough for one person much less 3.
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I too am a 65 year old woman, retired after 15 years of law and 31 years of law enforcement I though I'd have a smooth retirement. I had been looking for a larger home for my mother at 98 and a disabled sister at 63 since I had been going to their home for 10 - 15 years. I moved them in with me late last year. Caring for two adults in a 3 bedroom home can be overwhelming. My sister has seizure disorders but both she and my mom moved around their home and did things on their own. Now they do nothing more than sit at the table, wait on breakfast, lunch and dinner and go back to bed or take a nap until the next meal. They sit at the table like clock work even if I am sleeping late (past 8:00 a.m.) which rarely happens. I am up at 7:00 every morning and I get to lay back down at 11:00 at night after I finish the dinner dishes. Yes they can wash dishes but they do the absolute least so that they will not be asked to do it again. It's frustrating but I would not abandon my family or put them in a nursing home. Overwhelmed I found a quiet space right outside of my home where I can relax and rediscover my emotional freedom. Hiring someone to help or even going through Human Services were two options but it's difficult to invite someone into your home during a pandemic. I have four surviving adult siblings but a phone call once or twice a month is about what we get. I thought about getting a care giver service for a weekend or a few days to allow me to get away and distress without worrying if they're eating, or showering or oh my gosh, cleaning the bathroom. What I've found to be very helpful is just stepping away a couple of hours a day and doing nothing. Going for a drive, sitting outside in my design studio. Finding a good movie in the garage where no one comes. Of course I check in at 2:00 and 7:00 to put lunch and dinner on the table if neither of them takes the initiative to do it themselves which rarely happens.

The other thing I did that has really helped is I started a class in design. It's more like a creative venture as opposed to a career change and it's therapeutic to say the least. I've found if I just steal a couple of hours a day just for me I can manage the - 8 to 16 hours a day I have to cater to these seniors who simply refuse to do anything for themselves. Having my two dogs that come and put their had on your lap like empathetic friends also helps. I tell myself everyday it's going to get better and this is a test that will ultimately be followed by another testimony. I've found a couple of caregiver's programs through the hospital and just by accident I discovered this site. Hope my positive experiences can help others get through theirs.
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BurntCaregiver Aug 2021
RetiredWorking2,

You DO NOT have to cater to these seniors 8 to 16 hours a day or at all. I've been in senior homecare for a long time. Almost 25 years and am currently caregiver to my mom in her 80's. Believe me when I tell you that you're not doing them a favor catering to their every whim and waiting on them hand and foot. If they can do for themselves and are still capable on some levels then they MUST do for themselves. If everything is done for them like they are invalids, they will lose whatever independence and capability they have and will quickly become invalids.
Force them to do for themselves if you have to. Tell them they are not infants and are not going to be taken care of like they are. Give them chores. Like it is now their job to make sure the dishes are done, and done properly. Otherwise there will be no meal and they can go hungry. Insist that they fold and put away their own laundry, or help you with meal preparation, or cleaning, or anything else you think they are capable of. It's for their own good for you to be a little bit of a hard ass with them if you have to.
If they refuse and just sit at the table waiting for meals, tell them that they have lost too much independence and that you're looking at facility placement for them because you can't care for two invalids in your home.
You'll be surprised how quickly elders become very reasonable and excited about doing for themselves when nursing homes are mentioned.
I've had more clients than I can count over the years that were exactly like your mom and aunt. Expected to be waited on hand and foot. I always told them the same thing. That I was the only thing between them and their family putting them in a nursing home. If they were unwilling to even try, then I'd have to go. It always worked with the ones who were still capable.
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You can't get back what your life was before because that has past. Life is constantly changing. Maybe getting some hired caregiving help for your husband and mother would help you.
If you want to travel, respite caregivers can stay with your husband and mother. There are special travel and groups for people who are traveling alone and they're great. Finally the travel industry put two and two together and realized that people who are alone shouldn't have to miss out on travel because they have no one to go with.
You can't get back your old life, but that doesn't mean you can't have a life because you're also a caregiver.
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Hire home health aides to cover for you so you can travel. Private care is cheaper but hiring from an agency is more reliable. Install a camera so you can see & hear while away. Otherwise, it sounds like you can have several hours a day to yourself which is more than most so take advantage while you can! I’ve also found that having fun hobbies around the house are great breaks for me that bring happiness. For example, I found an itty bitty baby red slider turtle in my pool so I set up an indoor aquarium for it. I also have a grow light center where I keep lettuces & cooking herbs and start veggies & flowers over the winter for spring plantings. I also have jewelry making supplies that I might bring out again this winter. I also enjoy my little pets. I’ve taken up more cooking & am trying to learn new things in the kitchen. All of it brings smiles & the more the better :)
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Having things to look forward to enriches our lives. You want to enjoy the retirement you worked so hard to have. Yet none of us knows what our retirement will put in our laps. So many on here can relate. You must look into ways for respite and as many have suggested, by hiring other caregivers. And if you want a week away from it all, have your husband go to a respite facility or hire full time in home caregivers. But even more important is what you incorporate into you day, week, month etc.
When I had dad for 8 years, I still attended yoga, walked with a friend, bookclub once a month, bunco once a month, attended church. So it sounds to me like you need some connections. Call the library about a book club, there are even online book clubs. Do you attend worship? Join a woman's political group. I am just making suggestions. But it must be based on what YOU like to do. I just joined a crochet and knit group that I found from Groups on NextDoor app. An 80 yo woman who was in my yoga class hired a caregiver to watch her hubby with ALZ so she could attend.

Because you can't use family as a group to do things with, you need to make new friends and connections. So very vital as we age to not be isolated. Sit down and really think about what you would enjoy doing to meet others and pursue how to do it. Find a reliable caregiver to relieve you or what's wrong with the adult brothers helping out? Can’t they come over when you want to go somewhere.

It takes energy and initiative to do these things but you and your life will be better for it. Your husband can’t fill this void you feel.
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Spend time by the ocean at sunrise. Take your Bible with you and pray your heart out.
Jesus loves you, Jesus cares. Jesus is always there. Everything you go through He has gone through as well.

https://nourishforcaregivers.com has two meetings a week on zoom. Please fee free to join us.
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Gaylefarley Aug 2021
Wonderful answer!
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First of all, YOU ARE DOING TOO MUCH FOR TOO MANY - YOU MUST PUT YOU FIRST. I see a couple of options. I don't know about the financial aspect, but can you hire caretakers to take over so you have a life and freedom. I do NOT believe people should give up their lives to take over for others if it is going to negatively impact their lives and peace - as this is doing. As to the vacation, you must find someone to step in and YOU must go on vacation ALONE. Just do it - you must come first. If all else fails, perhaps you have to consider that these people need to be placed in a facility so you can have a life. It is not fair you are being destroyed. Please look into this options.
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M209M209 Aug 2021
Agree. Learning to say No is hard but essential to prevent potentially irreversible damage to yourself.
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Living by the ocean is a gift in my book. I would take time off and go to the beach, walk, read a book or just sit and look at the ocean.
How about taking a well deserved vacation alone or with a good friend.Your husband should understand you need a break. Let the two adult brothers take care of your son for the two days to give you a break. It is great your husband can take care of himself pretty much and you are able to get away alone for a few hours. I know you want the life back lots of caregivers do. Ask yourself this question would you be willing to get help for your husband, disabled son and mother. There are options here. I understand you need a life but it will not ever be the same as before. Please take your vacation and do some fun things for yourself. You really can't go on caring for three family members. I would be in the looney bin if I did that. I take care of my 98 year old mother for about 21 years. I can't imagine caring for another. I am so busy and I have help from 2 other family members.You are so kind to be looking after all of your family but you are one person and it will affect your health, it will catch up with you and then what will happen to them? You need to think about that. Hope you decide to go on that vacation and get some help.
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NannyAnn: Imho, please get respite through any means possible, e.g. Visiting Angels, et al, else you fall faint and ill are are good to no one. It is IMPERATIVE that you take care of yourself.
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Vacations are nice, but fleeting. If you want your life back or at least to wake up happy to start the day, you need to carve out time to do things that let you be you. What did you do that fulfilled you? What was a passion?

Take those walks on the beach. Maybe take photographs of the beach. Or build stone cairns on the sand. Or paint stones and leave them for someone else to find. Or soak up Vitamin D while you read on the beach.

If you’re creative, find a YouTube or local class and put it on your calendar - and follow through. Create! Even if you’re rusty. Even if you’re doing something basic.

If you’re into chasing balls (my condolences), go golf or play tennis. If you want a slower start, smile for 60 seconds three times a day. Try qigong (lazy yoga and meditation in a good way) on YouTube. Take those walks!!

If you need company, volunteer. I think too many people underestimate the flexibility and perks.

You said DH can take care of himself for 4 hours. Let him prove it to you and feel competent.

And mostly, don’t feel guilty for taking time for yourself. If anything, feel guilty for NOT taking care of you. You need good energy and a positive attitude to be a caregiver. To do that, you need to support your well-being. Consider “me time” a job requirement :)
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Tamg59 Aug 2021
"Smile for 60 seconds three times a day" what a simple way to improve the day without much time involved!
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I 2nd Riley who wrote:
"YOU ARE DOING TOO MUCH FOR TOO MANY - YOU MUST PUT YOU FIRST. I don't know about the financial aspect, but can you hire caretakers to take over so you have a life and freedom. I do NOT believe people should give up their lives to take over for others if it is going to negatively impact their lives and peace - as this is doing. As to the vacation, you must find someone to step in and YOU must go on vacation ALONE. Just do it - you must come first. If all else fails, perhaps you have to consider that these people need to be placed in a facility so you can have a life. It is not fair you are being destroyed..."

* YOU MUST START PUTTING YOURSELF FIRST. Otherwise, you will slowly or not so slowly acquire physical and mental (and psychological) issues .

You are way too young to (and even if you were older) to stop living YOUR life.
Get help, any and all help you can. Why haven't you gotten caregivers?

* Only you can make these changes.
* Get to that beach or ocean - as if your breathing depended on it. In a way, it does. You need to stop this cycle (as good intentioned as it is / was).
* I do not want to see you have a breakdown or age more than your years you naturally would.

QUESTION: what is the life you want back?
1. Write a list of what you want and then write what is practical and possible.
2. What is stopping you from getting your life back?
guilt-------- not settling boundaries------ something(s) else?
* In order to care for others, you MUST care for YOURSELF FIRST.

Gena / Touch Matters
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It's astonishing how identical our situation is here, right down to the 'son in the rental home'. LOL
I had to leave my dream career early where I traveled to every corner of the world, at times with my wife for a high tech company. Just 2+ short years of care giving later I'm experiencing same identical feelings, at the same age.
I discovered I may have been partial cause of her constant need for my support. I had been doing everything for her, at times before she even knew she wanted it done. The more I did, the more she needed, and the more I did - again. To the point I was developing some very serious psychological problems and feelings I've never had in my life, especially starring at nothing but a dark future.

So I started making a list of tasks we felt comfortable for her to accomplish (using walker). In the kitchen, dishes, folding cloths and so on. It seems I may be seeing a glimpse of self respect on her part, from being filled with self hate which was destroying our relationship. This list is actually growing.
So far it's still requiring as much time to motivate her as it did for me to do them myself. But the goal is break her addiction of snapping her fingers for me to respond.
And, I will be applying the same tactic with my son who's living in my rental home. He'll be on the accelerated version.
As a matter of fact, I'm thinking of having my wife stay with my son for a week or more and I'm going after some "me" time. She'll like that spare bedroom.
Not sure if that's a option in your situation, but my son has no choice in the matter. He has had major delayed learning disabilities growing up but decades of support from his parents gave him a fairly self supportive life.
When we say we 'just want our lives back' most people have no clue what young people in our 60's are talking about. So I'm going after 'baby steps' to get some resemblance of mine back.
Stay strong
Encourage others to do the same.
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My wife is feeling the same way. Two years ago my (then 98 year old) mother came to live with us. Hospice just put her on "Remedial" care (someone comes in once a month to check on her). She's strong as a horse - blind, big memory issues, and half deaf, but looks like she'll last a few more years. After we got done taking care of my wife's mom and dad (they died of complex medical issues), she was all set to have a life of our own. Now, my 42 year old son has moved back with us, too. He's a good kid, but his mental issues make it difficult for him to build a life, and his roommate turned out to be a partyer and covid-denier.

Now, my wife is depressed, bitter and starting to have a worsening relationship with my mother. To be fair, my mother can be pretty caustic and demanding. I'd ship my wife out to her sister's, or push her to take a vacation, but she really wants the life together we promised each other so many years ago.

I don't have any advice, just sympathy.
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We all do what we can do until we come to the point where it is too physically and emotionally demanding. At that point we have to make a decision and take a stand.

If we are lucky they have LTC and/or finances to pay for continuing care at home or in a facility. If not, we have to qualify them for Medicaid. Whichever it is, we have to use those resources to get the best care we can. For those like myself, doing home care, when it comes down to the point where we just can’t go on personally taking care of or overseeing their care, then I guess it is time to consider a nursing home setting. At that point we need to be kind to ourselves and realize we did the best we could. No one ever expects to reach their own “golden years” only to find that they are really made of steel - not gold. I certainly didn’t.
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is there any way to get someone to come and help and give you some time to spend on the beach? surely there has to be someone else on that island that can help. Can the other 2 adult sons take charge over the disabled son(brother). do you need to supervise all 3 of them? sounds like you definitely need a break and or someone might need to go into assisted living......sooner than you have a health breakdown and they all go somewhere....including you. Get some help now before you fall ill and then you will be no good to any of them. wishing you luck.
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I'm the same age as you m I must say you have ur hands full. After my mom was in a car accident I had to really step up n take care of her needs daily. Thank goodness we only live a block away so I walk up there few times a day to check n help her. I don't drive as legally blind. But after a year it was exhausting. I got to point I didn't want to walk up there to cook dinner clean up change the linen. Moving in with her not a option n her with us. One night she fell n broke 5 ribs n off to hospital. From there rehab. She's been there for 7months n now she can't walk. My sister told me quote... I'm her daughter not her care giver n where she's at is the best place for her. I miss her at her house n the talks we had but mentally it was best for me. I want a life too especially with the little sight I have left before it all disappears.
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