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Just want to say this forum has given me so much guidance. I am 68 years old, female, with severe back injury, depression and anxiety. I currently care for my mother in an apartment we share. She has Dementia, and a number of other illnesses with Dementia progressing. She is beginning to make constant demands, won't shower, and will not take her medicine if left alone. I do have 2 caregivers helping me to get out of the house but as I've been doing this now for 10 years, I am starting to miss having a social life more and more. This situation is very isolating for me as well as her. She refuses to go to an adult day care where she could at least mingle with others in her age group. I've recently met a nice man whom I would like to go to dinner with or a movie occasionally. I've told him my circumstances and he does empathize with me but I think this relationship will be short lived as all my other desires like working part time. It all goes back to my full time responsibility to my mother. It just is not a normal lifestyle for anyone. Is it even possible to have a normal life as a caregiver for a parent? I don't have the finances to hire in home care everyday. How do you put aside your dreams so your mother can live comfortably? She would not survive a nursing home as she is used to having me wait on her. Wilting away.

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Your life changes completely. I do not think you can have the life you had before being the sole caregiver. In the early morning I sit on the front porch usually with a cup of tea listening to classical music for about an hour. This is my respite. I take my mother out for lunch, a drive, beach trip, lake outing, picnic. We watch movies together, talk about old times, go on a cruise. look at old photos, spend time with family, have a cook in. sit on the sunporch together. read a book. These are ideas that I do with my mom. You are taking care of your mother and adult day care is better than putting her in a nursing home. She will get used to it and she might like it after all. I would look into adult day care. Being a sole caregiver is not an easy task and you do not want to burn out or get sick yourself. What would happen to your mother if you get sick? I think it is great that you are caring for your mother. I really think day care is the answer. Do not feel guilty, it is in the best interest of both you and your mother. I do not have the desire to go out with people. My priority is taking care of my mother. I would not want to start a relationship with someone. That takes time and energy and time and energy is for my mother. I believe if you take on something like caregiving do it with all your heart. I hope I helped you in some way and wish you and your mother the best.
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She would survive a nursing home.......she just has YOU convinced she wouldn't! Put aside that erroneous mindset, like Dolly said, and place her in a skilled nursing facility where she will be safe and cared for, and so YOU can have YOUR life back! You are really in no position to care for a woman with advanced dementia anyway, let's face it. What will you do when she hasn't had a shower for a month and bacteria starts building up on her skin? Or when she refuses to take ANY of her meds, and on and on? I'll tell you a true story that may help you make a decision: My cousin had her 90 year old mother living with her for 5 years. When mother sold her home, cousin wanted that money, so she figured she'd take her in for the 5 year Medicaid look-back period, then afterwards, she'd have her placed in a nursing home at Medicaid's expense. Well, mother was dying in the bed under the 'care' of my cousin, withering away. Cousin called us all and told us to come say goodbye to mom that she was dying. Shortly thereafter, for some reason I can't remember, Cousin placed mom in the skilled nursing facility and guess what? She perked right up, got out of the bed and into a wheelchair, started socializing with other elders, and went on to live another 4 years!! She wound up being MUCH better off in the nursing home than she was at her daughter's home.
My own mother, 92 with dementia, is in a beautiful Memory Care facility and has a lovely hotel room type of suite. She's very comfy there, and SUPER well cared for, with plenty of activities to occupy her and 3 hot meals and 3 snacks per day. There's even a beautiful garden outside to stroll or wheel around in. It's not a 'horrible' place like so many think..........times have changed.

Place mother and take your life back, you deserve it! And the answer is NO, you can't live a normal life while caregiving 24/7. And you definitely should NOT put your dreams aside so your mother can live 'comfortably'.........she can do that OUTSIDE of your home!
Best of luck!
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Your mother will survive in a home, you have convinced yourself that you are the only one who can "save" her, this is not true. She is 94, she has lived her own life, on her own terms, you have paid your dues to her....might be time for you to start living your life.
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Easy to say, I get it. But go to dinner or a movie with your nice man, Essie. No, go to dinner AND a movie. All in the same night. You can have a normal life. I don't want to sound harsh, but especially once the dementia sets in? It's not up to them anymore and you need to do what's best for you, while finding a way to care for her at the same time. There are options, although not always easy to figure it out. I hope you stop wilting away. Someone else can wait on her just like you do. And you will still love her, without taking daily care of her.
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You can go see her everyday in a nursing home if you want but still have your evenings free. My aunt and uncle both had Parkinson’s and was in the same room at the nursing home. They couldn’t do anything for themselves so one child would come and feed them everyday. I think the nursing home fed them in the evening. Your mother doesn’t have to be waited on except to make sure she is clean and fed. I read about all these caregivers waiting on their parents constantly and I don’t understand why. Let them watch tv, read or do crossword puzzles and if they can still walk, they can get it themselves. Life is short. My husband died at 50, 2nd one 58, father 69, sister 63, and brother 66 and they all died from cancer so most people don’t live as long as your mother. You need a life now before it is too late.
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Put her in a Alzheimer’s facility. My mother-in-law was in one and was taken care of very well. She was in a veteran’s one since she was a vet. She was like a sweet toddler but a big sweet toddler type adult that has to have her diaper changed, bathed and everything done for is very hard especially when the person doing it is a senior themselves. It isn’t worth it because besides destroying your body further, you destroy what is left of your life and most people don’t live as long as your mother.
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These posts are really encouraging. I think you should consider the option of a facility. I don't know how the financing of these places work, (mine was only there 2 and a half months) but toward the end of my mother's life, in a private care home with only a handful of residents, my mother's condition worsened. We were paying a lot of money for it between 4 siblings.

She had Alzhiemers and it wasn't an appropriate place for her and she ended up hospitalized. In part, and this isn't to blame my sister really... but I think had she visited more often, she would have seen things that she missed. Unfortunately, after only 5 days in the hospital with mal nutrition and pneumonia, they released her. My mother couldn't speak anymore and couldn't walk and was having having problems swallowing. She also had small bed sores. I was livid!
I flew out to help because my sister had gone on vacation just prior to the emergency. I went from place to place trying to find her the best situation and felt heartbroken over it. 2 facilities didn't want her, with one turning her away once there.
Finally found a place. They were understaffed and it was scary facing the possibility that she could die there. I was there 9 days, and had I not been, believe me, I do think she would have been neglected. IN fact I saw that she was on 2 occasions when I came by the place in the later afternoon instead of coming by in the mid morning and staying until mid afternoon. I also helped change her diapers and bedsheets while there.
The point is, in someone who has a condition like my mother had -- it's essential for family members to show up and to confront anything that is being overlooked. I did -- and I did it in the best most "nice" way possible because I was appealing to their humanity. The sad truth though is, these people are underpaid and overworked.
I guess my point is to show that it doesn't matter how much or how little you pay, the same situation can occur without family being involved and even then it can still happen. You have to be vigilant and on the ball to insure your loved one is receiving the best that is possible.
Plain and simple though -- to have a life of your own, you will have to make a decision to help make it happen. Or else it won't. You've given 10 years and are wearing out. Please take care of you.
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Suetillman Jun 2019
If the person doesn’t own a home or have much money, Medicaid will pay for a nursing home. Now if they do own a home, they would have to sell and pay it toward a nursing home and then when the money runs out, Medicaid will start paying. If the person is a vet like my mother-in-law was you don’t have to sell your home and the veterans home is free plus they paid my MIL about 300.00 a month for anything she may need. At the VA home she had her own private room, library, art class, beauty shop, fishing pond, birds in a large enclosure and a cat. She didn’t get to use most things because she had Alzheimer’s but they took good care of her. My nephew has been in a nursing home for 30 years and for the part, he has been taken care of well and his mother visits several times a week.
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It isn't easy, but yes. More importantly it's called sacrifice, like she (hopefully) did for you.
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CarlaCB Jun 2019
This is such a false equivalency. My mother had a family because she wanted to have a family. In that sense, it was no sacrifice, because she chose it over the other options available to her. If raising children was a sacrifice, we wouldn't have adoption and fertility clinics. There's a lot of joy in having children and watching them grow, to balance out the hardships. the same can't be said for caring for an ailing parent and watching them decline and die.
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In reply to your head question, yes of course you have a life. You just don’t like it. ‘I don’t have a life any more’ is just a way of throwing in the towel. You are only 68, you have options, do something!
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Hi If you have 2 caregivers, how many days and hours are they with mom? Can you up the hours - ie im assuming its paid with Medicaid? I would imagine that enables you some flexibility to perhaps work PT or date(during the day)? I know its not easy - but eventhough our loved ones might be fed, dressed and cared for in a facility - I would venture to guess many would prefer to stay home(with assistance if needed)...unless staying home is not an option due to excessive medical needs......My dad hated being in Rehab centers when he was there for short stays for broken bones....last summer he was there 6 weeks and I had to be there daily for hours at a time because he hated it so much...….plus it was loud, noisy, cramped and just not a great experience......he ended up getting sepsis, mrsa and heart infection his last week in the facility and they "tried" to diagnose and treat as if it was just a UTI - 9 days later I fought for him to be released to a hospital where they discovered how sick he really was.....he stopped eating/drinking because he felt so ill and was in emotional and physical pain....rather than send him back to a facility for 8 more weeks of treatments with antibiotics that "might" work, feeding tube, urinary catheter, stage 3 bedsore and recovering hip - I chose hospice - it seemed like I was caught between a rock and a hardplate…….but I think he would have suffered greatly in one of those facilities and he died within 3 days inpatient hospice - but that also caused great guilt for me since I feel they euthanized him - my point is - I think we will always have guilt...….I do fantasize on certain days about what if I brought him back to the facility for treatment - would he eventually gotten better eventhough it would have been horribly painful for him ie doubt these facilities treat pain well if you are not in hospice ie when you are in active care......getting old sucks and being a caregiver with these decisions is horrible! do whats in your heart!
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Get your precious mother of 94 professional loving care, not in your home! It's time.
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"She would not survive a nursing home as she is used to having me wait on her."

Would you like to have a look at that statement?

What is it that you think would be lethal to your mother?
What is your definition of "survive"?

It's complete rubbish, isn't it. A change of personnel would not kill your mother. A change of routine wouldn't, either. And "would not be pleased about being in" is not the same thing at all as "would not survive."

Look. There are choices to be made throughout life, and some of them are very difficult, with all of the available options having some drawbacks to them.

But the worst choice of all is to make sacrifices for somebody else and then resent having made them.

Project yourself ten years ahead. If you can see yourself alone and thinking "I gave up everything to devote myself to my mother's care, and it was worth it" then good for you and may your mother appreciate her blessedness. But if you're going to hold *her* responsible for a life you're not happy with, then you need to do some rethinking now.

I recommend you get support from a counsellor or therapist, because after ten years it would be difficult to deal with this on your own - how can you see the wood for the trees? Your sense of responsibility for every single aspect of your mother's life and the anxiety you feel about delegating it are looming obstacles that stand in your way when it comes to work and relationships, but that doesn't mean they can't be overcome. And in fact, I wouldn't be surprised if they are much more readily dismantled that you can imagine.
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Erinm60 Jun 2019
Well written country mouse. I’m going to find a way to have your last post easily available on my phone the day I finally get my mother in to memory care. Thanks for writing that post.
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Being absolutely blunt, what does she have to live for? Let her go into a NH where her needs can be met and you can visit without being stressed out when you see her and if she passes then so be it - we all have to go sometime and you may get to have some better memories than the ones you will have at the moment. The simple answer to your initial question is NO, you cannot have a life whilst being a 24/7 carer.
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It is very difficult to be a family care giver, especially when you do it full time. That's why you need a relief from it. So many family care givers burn out fast and some get in depression. They will be good neither for themselves nor for the person they care. The solution is to hire a care giver at least for few days a week
You may need to take a job and apply for assistance from medicaid for your mother. Medicaid will ask you to provide a letter from your employer that you are out to work certain number of hours a day and a proof that your mother doesn't have income assuming that she doesn't and a letter from her doctor that she can not be left alone home. Medicaid will pay for care givers.
You need to get back to your social life, take care of yourself. Don't feel guilty leaving her with care givers. This is a process. There are very nice care givers out there who will handle her like their mother. You can remotely monitor them and see what is going on in your home on your cellphone. When you relax and live your life, you will be very nice to your mom.

I wish you luck.
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I’m proud of you for caring for your parent.

That man in your life may appreciate you more when he sees your kindness illustrated through your caregiving. Let him into your world. If you feel that you have to hide your day-to-day reality from him, you’re not showing him your true beauty.

If he helps uou with your mom, he’s a real keeper. They do exist!

Your mom won’t live forever. You will miss her when she’s gone. I sure miss my mom.

Try to enjoy every day, regardless of the imperfections. If your mom were gone (or in a nursing home) you would still have problems , just different ones.
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lealonnie1 Jul 2019
My cousin likes to remind me that I will 'miss my mom' when she's gone. I wonder what purpose that statement serves? Is it for guilt? To say that I should lay down my entire life for my mother because I'll feel terribly guilty later on if I don't? I think, if the OP were able to enjoy her life, she wouldn't be on here pouring her heart out looking for advice from a forum of caregivers, do you? Sometimes it's all just Too Much. Even for those who Love Their Mother and Plan to Miss Her When She's Gone. It's still Too Much. The joy of life can get completely erased after a while. And to minimize the enormity of pain by referring to it as 'imperfections' doesn't begin to address the reality many of us face. Full time, in home care giving is not for everyone and for those who cannot do it, we should not be made to feel guilty or shame.
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EssieMarie -

I am so sorry you're in this situation. No, I don't think it's possible to have a normal life when taking 24/7 care of a parent. I was not taking care of my mother 24/7 but just having to be available on a daily basis in case she needed something made it impossible to pursue any of my plans and goals for retirement. This became more pronounced in the final few years when there were more emergencies and Mom was capable of doing less and less for herself.

I can tell you it won't last forever, but it did seem to last forever when I was doing it, and I only did it for 7 years. The advice my therapist gave me was to stop believing that my mother would not survive in a nursing home, because every caregiver believes that and it's almost never true. People do adapt to living in a nursing home. Realistically, if your mother's dementia is progressing, you will not be able to do this for much longer. It becomes more than a one-person job. Try to believe that your mother would be better taken care of with a 24/7 staff of trained caregivers. Eventually it will come to this, unless your mother dies first. I wish you peace and wisdom to deal with what comes next.
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Not much of a life here, but I do try to make the most of it. I am 64 yo, female, and full time care-giver for my 89 yo mother. Have been since November 2015. She is ambulatory, but needs assistance with most things. Toileting, dressing, showering, etc. She can't do much for herself any more- even changing the channel on the TV confuses her. But thank goodness, she can still get out with me.
So I don't go totally nuts, we go out to listen to music as much as we can. She seems to enjoy the same music that I have introduced her to through YouTube. I am a big fan of Texas Country/Folk, the Ameripolitan sound, Western Swing, and similar. Last week-end we got a hotel with roll-in shower, and music venue at the hotel. I always look for accessible venues. It was a Rockabilly week-end. We were out until after midnight for the Saturday night show. Then we drove 20 miles the next day, for a Hillbilly Jazz matinee. She has had her picture taken with a lot of the musicians that we have seen.
We only can go to fairly small, intimate venues. She has had a great time, and gives us both something to look forward to. Then when we are at home, she has photos, and we can pull up the videos of the people she has met. Not much of a life, but this does give us something to look forward to.
We also try to do outings to small local museums, or heritage sites. Love streaming YouTube onto the big TV. That way we can check out the situation ahead of time. Am aiming to do something once a month or so. Gives us both something to look forward to. My life, for the duration. Hopefully she remains in good enough shape to continue this way.
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jacobsonbob Jun 2019
It looks like you have a "program" that is working well for both of you! I hope this continues as long as your mother is capable of doing so, but if the situation changes, I hope you both will be willing to face it and deal with it even if it is unpleasant. Until then, you will both have a lot of fun and make some wonderful memories!
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You cared for your mother in her home. You care for her now in your home. Your mother has dementia and her needs are only going to increase. Here is an excerpt from an answer on another thread that I felt hit all the right notes. In that thread, the person with dementia who needed a higher level of care was poster's father and so hence the "he"s and "him"s:

"He will not make the decision and that is clear. I would say that breaking down and crying is a normal and appropriate response. I would ask him if he wants to go with you. If not, I would tell him you will go and make the best decision for him you are able. But gently make clear that this is how it will be now. It is, as with very young children, best not to give choices when choices are confusing and frustrating. It is best to gently say what will now happen. Don't expect a good response. Expect an honest one. Which will be grief. There are times when grief is a fact that cannot be avoided for you all."
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My Heart was broken into pieces when I placed my mom, and she, in her typical fiercely stubborn fashion, subsequently lived 5 1/2 Happy, healthy years in a beautiful facility 5 minutes from my home.

I visited every day and am forever grateful for the compassion and love I found for her there.

”She would not survive in a nursing home” is a tragic way of justifying your present situation, and we ALL think that at one time or another in the course of care, OF COURSE she wouldn’t survive in a nursing home. She wouldn’t survive on the French Riviera or in your apartment or in the White House or at Disneyland either- she’s 94 YEARS OLD.

MORE IMPORTANT, WHERE WILL YOU SURVIVE? EVEN MORE IMPORTANT THAN THAT, where will you THRIVE? After 10 years, you DO deserve some THRIVING, you know!
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NYDaughterInLaw Jun 2019
"'She would not survive in a nursing home” is a tragic way of justifying your present situation...'" Yes it is tragic. That was an excellent way of framing the issue, and I hope Essie feels the empathy contained within that statement.
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Wilting Away, (yes you are)
It’s so hard for a daughter to set better boundaries with mother. There are hundreds of books written on the subject. If it were easy, it wouldn’t be such a common problem and you’d be better off today. Not easy. So, give yourself that.

I understand the feeling that you HAVE to do this or that, because mom wouldn’t this or that....I did those same excuses, and while I didn’t think that’s what they were,
that’s what they are. You don’t HAVE to.

I’m in the same kind of boat you are in, and my boat is going down unless I abandon ship pretty soon. So, I get it. This is hard! No easy answers, but I think by posting your question, you have made a huge step to move ahead. This is a great site, and includes many smart and caring folks willing to help you. I see you already have some good replies with thoughts and suggestions. Not all suggestions will be appropriate for you, and some may be a bit flakey.
But you must be open to questioning your “She cant’s” and listen to, study, think about new ideas presented here so you
can find your way. That is what I have found.

So I’m re-reading many kind and helpful replies, changing the things I can in little steps, until I can manage the bigger steps. It’s a process, change is. And this situation is complex, filled with fear and guilt and so many other emotions that cloud our abilities to make good choices for ourselves and our loved ones.

Since you do have some help that allows you to get out, I hope you and your new friend could enjoy outings together. I have an anxiety d/o, too. Hope you refrain from talking too much about mom, but that’s been your life for 10 yrs., and perhaps you are feeling a little under-socialized regarding topics of conversation? That’s how I’d feel but I wouldn’t talk too much about mom. He may have lots to say, and a good listener is very attractive!

I hope you keep keep up with this site and learn and grow,
other’s experiences may help guide you. I’ll look for you!
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EssieMarie, I understand that you don't want to put mom in a facility, I don't think anyone wants to put another human being, much less a loved one, in a facility. But she will not die because of it and if she did die shortly after placement it is because she was going to die anyway.

I saw my dad actually get better, the schedule that was kept for meals and medication, the interaction with others of his age group and the lack of worry about how household chores would be completed or not, served to let him focus more on himself. He hated it, but he got better. I would do it again, even though it was the hardest thing I have ever done in my life. It was the best thing for his wellbeing.

You matter as much as your mom and some how that has been disregarded for these many years. Please check into a senior activities center or assistance to get in home help. You are not responsible to pay for her care, she should qualify for aid. Before you have given your entire life to her, please find a way to get you back.
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My mother had dementia, and beyond that, she was a little tyrant who had to have everything her own way. She was also very intelligent and thank God, very organized. However, I knew I could never be her full-time caregiver.

At this point in your life, it seems that you have ceased to exist. You can’t concentrate on anything beyond Mom’s wants and needs. You can’t do *this* because Mom might get upset. You can’t do *that* because, again, Mom might get upset. It is very difficult to deal with dementia. They are like unreasonable, spoiled children. So, you need to take care of yourself. One thing I noticed with my mom is that her sense of self-preservation was great. She may have sulked and not eaten for a day or two. When I heard about this behavior, I stopped bringing treats for her. When she began to eat again, the treats came back. She was narcissistic and concentrated only on herself, but it got her walking the halls of her facility and tidying her room. To her credit, she did try to make the best of her situation.

I agree with Barb. There is a misconception here that ALL nursing homes are filthy with staff who ignore their residents and abuse them. Well, some are. That’s why we do our homework and make unannounced visits. My mom’s Medicaid facility was wonderful.

Will your mom pass in the facility? Probably. But more than likely not BECAUSE of the facility. It wasn’t easy for any of us who had to do this. Blame it on increased longevity. 90+ year olds aren’t that uncommon any longer. You have done your time with Mom. There is no reverse gear on dementia. Sad to say, it will only progress and get worse. Take what you can for yourself while you can, be it a gentleman friend and/or a social life. Explain to this gentleman that you are definitely interested in a friendship. There are some things you need to do first (and don’t dump the details on him. That will cause him to bolt for sure). You’d love to go for coffee or even for lunch occasionally. If he’s worth having, he will wait.

Good luck. Come back often and keep us updated.
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Lostinva Jun 2019
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I feel terrible when I read about folks who think that their parents will immediately die if admitted to nursing care.

My mom lived comfortably in a decent but not great nursing facility for 4 1/2 years. Her nutrition and health improved dramatically.

Your mother doesn't NEED someone waiting on her every demand.

She expects that, and you provide it. Needing and wanting are two different things.

It sounds as though she needs a higher level of care than you can provide at home.
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Only you can make the necessary changes here. You need to see a therapist to help you with establishing healthy boundaries.

You are entitled to living your life, as you please. Your money is not to be used paying for care your mom needs. That is mom's responsibility.
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