Hi! First time poster! My mom is almost 83 and is medium-dementia-ish. (she can run the microwave, go the the bathroom by herself, get herself ready for the day and bedtime etc- the only physical help I give her is to stand by while she showers mostly for my own peace of mind/safety worries) But otherwise, she's dependent on me to prepare her medicine, shop etc. She also has Asperger's syndrome. I always wondered why she was so incredibly quirky and somewhat detached emotionally to us kids and then I had a son who has Asperger's (age 14 now) and realize that my mom is 100% in the same boat. It has helped in some respects, but my two living brothers lived through hell with her growing up (I did too, but I'm more forgiving, I guess) and don't speak with her or care about her well-being. Even when I've tried to describe what I've discovered about her high functioning autism. Sooo...
That leaves me.
She lived in an apartment alone and was driving her car daily (which was sooo scary) but then I had to move her into an assisted living facility because she broke her hip last year and couldn't do the stairs in her apartment anymore. She complained that she wanted to live with me back then, but she at least had people around her all day. But it was $500 more than her SS check and guess who had to pay that? Not my wealthy brothers! (one told me "I don't care if she's happy or comfortable...not my problem" and wanted me to stick her in a nursing home "if this is so hard for me"...) Our state is private pay for Assisted Living and my mom makes too much SS to qualify for any state assistance. She has no assets but she has a good SS check.
So, with covid and the whole $500/month extra cost, I couldn't do the assisted living more than one year and moved her into an apartment in a building with much-more-mentally-with-it-than-she-is older people. I CAN'T have her live with me. She keeps odd hours and NEVER, EVER, EVER stops talking. She talks to herself constantly and as part of her Asperger's, perseverates constantly on things out loud. And she's incredibly touchy- hug, hug, hug, kiss, kiss, kiss. Not just because she's been lonely- this is her way of "loving" but it's excessive and frustrating.
I have a camera in her apartment and can see everything but her bedroom and bathroom so I can make sure she's ok when I'm not there. I bring her food constantly and have her over to our house for several hours twice a week. My son loves to hang out with her- they're very similar. He goes to her apartment for a couple of hours twice a week. I have a friend go there twice a week at night just to chat with her and keep her company. Otherwise, she is completely alone. So, maybe 20 hours per week, she sees people- otherwise, nothing.
I feel so guilty. I wouldn't want to be alone that much. She's odd but she's a social creature and liked that aspect of the ALF. She's always saying "Don't leave! Can you imagine being STUCK in here??" and "Can I come live with you?" and so on. I don't blame her for being lonely but at least we can visit now, whereas during Covid when she was in the assisted living place, we couldn't see her for 6 months (which she doesn't remember). If there was no Covid and I could afford the addl $500 per month, I'd totally have her go back there. But alas, here we are. She truly doesn't care anything about anything else in my life other than visiting her. I mean, she has no compassion for "I need to be home with my family, mom" (well, let me live with you!") "I HAVE to go to work, Mom" She knows how to use a smart phone but doesn't have enough memory to truly talk with anyone about anything so she doesn't call anyone. It's sad.
I have a job and also run my own business. My son is VERY stressful and my mom is stressful. I'm doing the best I can. I don't care about Christmas. I'm having a hard time keeping up with my business (I build websites). I just am stretched to the max.
Brothers don't care and I can't make them care. S
I can sympathize with you and with your brothers. My ex husband was diagnosed with Schizotypal & Aspergers after I divorced him. We were married, believe it or not, for 22 years and there was 'nothing wrong with him' for that entire time. Only I knew there was DEFINITELY something wrong with him, and it was a huge job staying married to him for that long. And the talking...........sigh. He had a way of pushing his hand right up in my face as if to say STOP, I know better than you........I have the answer to this, not YOU. And he'd proceed to talk my ear off incessantly. Dealing with people like this grinds away at one's soul, day in and day out, and after a while, we disconnect. I was able to divorce my ex, who I still love by the way, I just can't LIVE with or DEAL with him anymore, but you can't divorce your mother like your brothers have done. While I understand 'why' they've done what they've done, it's sad they're not there to help their mother out and to support YOU.
That said, you have nothing at all to feel guilty about! Your mother is a very, very difficult person to deal with and you're doing your very best for her. You have your son to care for, and that's your number 1 priority, a business to keep up with in order to pay your bills, and enough on your plate as it is!
Funkygrandma has given you some wonderful advice which I agree with wholeheartedly. Please realize that you're not your mother's entertainment committee, nor is it your responsibility to move her in with you. My mother has moderate dementia, will be 94 next month, and lives in a Memory Care AL on HER savings. When it runs out, I will apply for Medicaid and move her into a Skilled Nursing Facility locally. There is no way she can live with me, in spite of her saying she wants to ALL the time. It does tug at the heartstrings, I agree, but when we use our heads instead of our hearts, we realize how impossible it truly is to have these women living with us. We do what we can, and it is enough, whether they agree with it or not. For some people, nothing is EVER enough ANYWAY, so once you realize that, the guilt card loses its power over you.
Wishing you the best of luck in taking care of YOU and your dear son now.
- call and speak to a social worker (Dept of Health and Human Resources online). She can maybe get assessed for in-home services that may at least help buy some time.
- use her ss funds to pay for an in-home helper to keep her entertained for a few hours a day or help pay for services like house cleaning to relieve some of the burdens. Or, consider adult day care a few times a week.
- call a facility to see if your mom is more a candidate for LTC or MC. If so, then she can enter on private pay until she spends down her savings enough to probably qualify for Medicaid. Don't assume she won't qualify. If she doesn't have any other assets the form is easy to fill out but it takes about 3 months to process. Facilities are expensive so unless she's making several thousands a month in ss, she should qualify.
- Make sure going forward that she has all her legal paperwork in place: Power of Attorney, Medical Representative, Living Will, etc. If you don't have this and she won't assign you, this will make caregiving extremely difficult and will cause her to become a ward of the county. This would be a deal-breaker for most CGs.
I wish you all the best as you work to settle your lives. May you have peace in your heart that she has a loving daughter and that for some problems there are just no perfect solutions.
She was assessed for Medicaid last year because she fell and broke her hip and was in a rehab/nursing home area for 7 weeks, but she didn't qualify because of her SS$, nor did she qualify for any help from the Area Agency on Aging. But thinks for the suggestions- I was adrift last year when I started this "what am I gonna do with her" road, so I know a lot of people don't know about the whole process. But I do have POA and Medical Representative and Living will paperwork, so that is helpful. It has made all the difference this past year.
I am going to look into further help for her (for me!) to entertain her, I think. She has some $ left over each month which will help me pay for that. Unlike when she was in the ALC. Thank you for your willingness to encourage me and for your wishes for peace. I need it! :-)
While I can certainly understand what you are going through I have a grandson who is diagnosed with Asperger's and I care to provide for my husband with Parkinson's and run my own business too. I cared for my Dad with Dementia and my mother in law along with doing all the other things and was becoming burned out.
One thing you need to do is to step back and STOP feeling guilty.
You too have a life and need to live it. While it sounds mean, I ended up spending lots of money on mental health care for myself to learn to stop being so involved and allow myself to care for others without feeling guilty when I was not there 24/7 for others. It is not a sign of weakness and it is not cruel to have a life of your own.
You have a business and a job along with your son who is at a very impressionable age. It is great that he spends time with his grandmother and that they have so much in common. 20 hours a week really is a lot better than many people get, some people are put into homes and never get visits again.
My dad used to have a saying which I really didn't understand, but I finally get what he was trying to tell me. "When life gets in the way of living, sometimes you need to make a change so that (YOU) can live".
While it is hard to admit, our parents in the cycle of life are supposed to pass on prior to us, and we need to continue to live after they are gone if we give up on our jobs, goals, we won't have a job or business to return to when they are gone. This does NOT mean that you should not spend time with your mom, what it means is that you need to make time for yourself and not feel guilty when you can't have your mom live with you due to the current circumstances.
You can still show your mom love without having her live with you.
Welcome to the group.
Best of luck to your situation.
i liked your answer a lot!
thanks! :)
hugs to everyone!
courage!
Take breaks every day and get help on weekends so you have time for your life. If you don't take care of yourself, you can't take care of her. No one can do this "job" without help. You are a kind and good person doing the best you can in a difficult situation. Give yourself the gift of time to recycle.
I hope you can get some additional help to take a bit of the pressure off of yourself. I’m in a very similar situation and it’s both strange and comforting to read your post. During the Covid shutdown I was able to get additional help and it has made a huge difference in my life.
Best of luck to you and hope you’re feeling supported here.
You should check with Senior Welfare in the area and see what's offered.
You might check with the Asbergers Association and see if they have weekly meetings so maybe she can meet a few friends.
Is she physically and mentally able to go to Church?
You might call a Church Pastor and see if he or a Church Member could visit her once a week.
Have you thought about using mom's money to add on to your home so she could live with ya'll but actually be in her own space with a door to an outside area of her own, with her own bathroom and area with microwave and refrigerator?
You work from home and you said your son enjoys being around her, it might help you to have the two of them hang out together and maybe it would actually help you?
It appears that you need more people in her support network to share the load of caring for her. Are there any daytime programs for people with adults, especially those on the Spectrum? Maybe the State has programs to help keep her socially active in a secure manner for COVID since her health condition will never change. Your state probably has more resources available to help with your mom. Check with Medicaid and Medicare. Otherwise, check with family, friends, and local houses of worship to add extra visitors to her weekly schedule. Of course, every program and person should abide by CDC protocols for COVID.
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