Mom is 78 and has mobility issues (walks with a cane). She has always had a lot of anxiety. Probably PTSD from her childhood abuse and rotten parenting. As far as I can tell, she has no dementia. She drives, but very limited (no highways, not after dark, etc.). Dad is almost 80 and has behavioral variant frontotemporal dementia diagnosed in Jan. 2021. He no longer drives or handles money except a debit card with a very low limit. I have DPOA for him and HCP for both of them, and I pay all their bills, taxes, etc. My dad is on a couple of meds for dementia symptoms plus a couple of others. In May 2022, I coordinated their moved from almost 1,000 miles from me to a house 3 miles down the road from mine. I have one brother who lives on the other side of the country. He helped with the move, but has not been to visit them or me since and calls them maybe once a month.
I take Dad to all his medical appointments. My mom hasn't seen a dr. herself in 30+ years and she refuses almost all my suggestions such as therapy, anti-anxiety meds, support groups, assisted living, continuum of care place, home health aides, physical therapy for herself, daycare for my dad, having a companion who just comes and takes him on outings to give her a break - all rejected. I visited all the adult daycare places within 30 miles of here, and found a free bus service, and took him for a trial afternoon to the best one, but when he said he didn't enjoy it, she refused to go further. I interviewed several home health aides, introduced her to the three I thought were best - she rejected them all. I found a senior services place that will set her up with a friend who will call once a day and/or stop by a couple of times per week - not interested. When I went out of town for a vacation, I arranged for a nurse to visit them every other day, but after the first visit, mom told her not to return.
Mom gets very depressed and freaks out at times by being isolated and alone with my dad 24/7. I get it! I would too! He barely speaks and wants to watch TV at a blasting volume close to all his waking hours. I have suggested she could go to a senior center, the library, coffee shops, places of interest, just drive around, etc. She made one friend but now doesn't want to see her anymore because this friend suggested she see a dr. about her mobility issues. She has another friend that she emails with but who lives too far to visit.
The only thing my mom wants is my company. I do visit usually twice per week, including taking her out to lunch, doing things around the house that she needs, doing jigsaw puzzles, etc. Like one visit per week is at least 3-4 hours. But I work full time and I have my own home and husband and dog. She does feel guilty about making demands on my time, for instance she refuses to come over to my house except for things like holiday meals. Sometimes she says she thinks I just "squeeze her in."
I know I have to set limits and then should not feel guilty. I know I didn't cause it, I can't cure it, and I can't control it for either my dad's bvFTD or my mom's mental health and self-imposed limits. I hate seeing her so pathetic and depressed and crying.
Any suggestions?
Also, how do I search the forum by topic or member name?
You're the one burning out, not your Mom.
Yes, you didn't cause it, can't control it and can't cure it -- I'm so glad you have this clarity. Nonetheless, these facts don't help you feel good or aleviate guilt (only you can rid yourself of guilt).
Your only real option is to set boundaries with your Mom and not feel guilty about it. I don't know what to say about anyone who isn't willing to help themselves even a little (like your Mom taking meds for anxiety) except to throw my hands in the air and say, "Oh well!" She is irrational and you need to stop dealing with her as if she's a rational person. She won't ever be, and probably never was.
Perhaps you talking to a therapist about boundaries and guilt will help you to protect yourself and nudge your Mom towards accepting some solutions. Right now, you are the only solution and if you severely limited or completely removed yourself you will prevent yourself from burning out.
When your Mom begins frantic attempts to reabsorb you into her world, you gently tell her what your limits are and remind her that she already was shown solutions for all the other issues. You will need to be very firm in defending the boundaries you choose. It will feel bad and terrible for a while, but then it will improve when "something finally gives".
As PoA, you will need to see what the criteria is for your authority to become activated for your Mom. You can give your Mom 3 choices (because that will help her feel like she still has some control):
1) she accepts and pays for whatever in-home help benefits your Dad, her and you.
2) she agrees for both her and your Dad to transition to AL
3) she agrees to not call you for help if she rejects #1 and #2
...something like that. Then if/when she continues to reject help, she has essentially "chosen" to reject any more help from you, as well. Keep reminding her she made this choice (when she complains) but it's not too late to accept the other solutions. Keep putting the "blame" (and control) for her situation back on to her, where it belongs.
If you think she honestly and medically cannot make decisions in her own best interests, then you will need to decide where to go from there. But, as your Dad's PoA you can certainly transition him into AL or MC whether or not your Mom agrees or follows.
I think a crisis is going to be the only thing that convinces her she has to move to AL and likely him to MC.
It’s very hard to say whether she is capable of making sound decisions for herself and my dad. She’s not reckless like some I read about on this forum (falling down drunk in bars at age 81, living in squalor, hoarding etc) I think in a court of law situation, she would be judged competent.
Even if your Mom went to an AL, she would be the same way. This is your Mom. She probably has always been like this. Its exhausting dealing with people like Mom. They are never happy. My GF was like this. No abuse in her family but she had old parents. Her Dad was in his 40s when she was born. She was an only child. She complained all the time. She expected people to act a certain way and when they didn't she became upset. Suggestions to better things for herself were met with excuses why she could not do it.
My mantra...I am here to help people find a way, not be the way.
Your Mom will never be happy. Its just not who she is. And you cannot make her happy even if you quit ur job and were with her every day. You don't need therapy, she does. You do what you can and tell her it has to be enough.
Your Dad, frontal lobe Dementia is one of the most aggressive ones. This is where the emotions lie. Dad could become aggressive and even violent. He will eventually need to be placed because his care will get too much for her and you should never feel u need to help. But even when that happens, Mom will be Mom. And her health, she will end up in a hospital at some point. At that time you have her evaluated and make sure labs are done. If ever she becomes 24/7 care, do not take her into your home. This is when u place her.
You must keep telling yourself that nothing will ever make Mom happy. You could give up everything for her and she will never be happy. She has no idea what being happy means.
I kinda get where she is coming from.
No one likes to admit that they "can't do it all" and no one likes to ask for help.
As a matter of fact I tell people in my Support Group that 2 of the most difficult things as a caregiver is
1) Ask for help
2) Accept help.
Since you are POA for mom sit down when you are both calm and have a few minutes.
Start the conversation like this:
"Mom, you know I am concerned about you and how much you do. Since you do not want any help I need to get a few questions answered just in case something happens to you.
1.) If you get hurt taking care of dad where do you want to go for rehab? And if you do need rehab where will we put dad while you are not home to care for him?
2.) If dad gets hurt while you are taking care of him where do you want him to go to rehab?
3.) And a sobering statistic is that many caregivers die before the person they are caring for because they neglect their own health. If that happens where would you want dad placed because I can not care for him.
Any one of these questions might make her think.
It is difficult letting someone come into your home and care for your Loved One. This is even more difficult when it is a Spouse. We have been "taking care" of this person for most of our lifetime. It is difficult to admit that we need help and to top that no one can take care of our LO like we can.
If it comes to a point where you truly think that she can not care for herself and your dad you might have to pull the "I am your POA and you need help and it is either having help come in or I will have no choice but to place dad in a facility where his needs will be met."
Well OF COURSE you squeeze her in! Does she not comprehend the fact you have a full time job, a house and husband to care for? Grocery shopping, cleaning cooking, etc? And now 2 super needy parents who REFUSE common-sense help that would free YOU up and stop the insistence on only wanting your company? Not to mention the false guilt she claims over being a burden? If she really didnt want to be a burden, she'd sign up for some of these activities you looked into after getting on anti depressants STAT.
The "I can't help it" mentality or blaming her rotten childhood that transpired 7 DECADES ago is ridiculous. It's time for mother to take responsibility for herself now by acting like an adult, sorry/not sorry.
Her being "pathetic, depressed and crying" is of her own making, my friend. When my own mother who refused meds her whole life became SO depressed she wouldn't leave her apartment, I called her PCP and told him the situation. He wrote her a script for Wellbutrin which she did not want to take. I said fine mom. You don't take the Wellbutrin and I don't come over anymore and help you out.
She took the Wellbutrin.
When parents act like children, they have to be treated accordingly.
Mom went on to stop feeling depressed and get on with the business of living after taking her meds.
Lay down the law. She wants XYZ from you. What do YOU want from HER?
And it SO aggravating when someone deliberately chooses to make things 10x harder than they ought. My grandma was like this. Anxious her whole life, worried herself crazy. We all begged her to get help. Nope, she didn’t want that. Just wanted to tough it out. We all loved her but she was often so draining to be around.
It sounds like she has a martyr complex. “Oh, don’t mind me, I’m so worn out, everything is so hard now, but I don’t want to be a burden… gotta go, I have 50 loads of laundry to do and make a big dinner for tonight, no, I don’t need help….” 🙄 She may feel like she isn’t doing enough for your dad unless she’s suffering. And may be using her anxious life to distract her mind from her husband’s decline and, eventually, his death.
Maybe part of her wants the attention and praise? “See how selfless and devoted I am, doing all this every day because I love my husband so much?”
You mentioned her dysfunctional upbringing. She may have had to be the ‘good girl’ to keep the peace. My mom is the same way. Wants people to recognize how devoted and nice she is.
anyway, yesterday he told her he was having problems urinating so I took him to the dr. As she is afraid to drive anywhere new. They diagnosed prostate infection. She said I was a saint for doing it. Yes, she could have called Uber or an ambulance and yes, my life would be a lot easier if they would move into AL where doctors are right there. Or so I like to think. Sometimes I read it’s just as bad once they get into AL.
I skimmed so I don't know if your last question was answered, but to search topics simply go to the top blue "AgingCare line, over on the right you will see the word "topics". Click on it and they are alphabetically arranged. To search members you might want to message, just click on their name and it will take you to their profile.
Sometimes we treat our parents like honored guests in our lives. No sacrifice is too great, and our righteous indignation is not allowed. I know; I did that. I eventually came to realize that they didn't have the capacity to understand that I wanted my life back! Dad once said that I enjoyed taking care of my needy mother....he really thought that. I did not. At all. She was a burden like no other.
I'm really sorry you're in this situation. I think you should lessen involvement with your parents. For instance, why can't mom take dad to some of his appointments? She refuses to drive anywhere new, which is practically everywhere they need to go since they've moved near you?
She seems somewhat like a case of learned helplessness, which so far has served her well. Everything she does may be an attempt to rope you further into their lives. If you were less available, she'd sit and cry and sulk and complain, but maybe she'd realize that she'll have to become responsible and do something. And yes, they both need assisted living. Life is easy there for people with their issues, and you're off the hook most of the time as long as you stay firm and insist that they schedule the facility transportation for their sorties into the real world.