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.
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.
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.
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.
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.
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!
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!
"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."
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.
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.
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.
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.
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.
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.
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!