Two Parents With Mental Health Problems

Dean FL

I'm taking care of two elderly parents who both have mental health problems and it's a crushing burden.

My father has degrees in physics and worked as an engineer. He has a solitary personality and looked down on other people for what he perceived as their lack of intelligence and obnoxious personalities, though he only revealed that he had that attitude about other people to family and close friends. During his working years he saved a lot of money for retirement.  He retired at 65. In his early 70s he fell partway down the Alzheimers cliff and continued to gradually decline. He's now 79 and is in the middle stages of Alzheimers. He is now extremely forgetful, easily confused, and is easily triggered into raging panic attacks. Usually he only screams during these but sometimes he hits things, throws things, and on rare occasions he even punches someone. I hid his car keys, which he thankfully didn't try to get back.

He used to take care of the household financial paperwork but he no longer does. He refused to teach me how to take care of anything because he assumed that any day I'd move to another state for a job so he never wanted to become dependent on me, or at least never become aware that he depended on me. So mom and I have to go behind his back to get anything done that he used to do.

We'd been having a hired companion spend a day a week with my dad so my mom could spend that time away from him. Usually dad gets along well with this companion, an elderly woman who is trained to handle people with dementia. But one time dad went into one of his rages, punched the companion and demanded she leave the house immediately. The companion likes dad a lot because of the conversations they've had so she was willing to try with him again. Mom and I discovered that dad hadn't been taking his psych meds for a few days, so we got him back on them. The companion came back the next week and dad behaved well with her again, but dad's dementia keeps getting worse and that makes his comfort zone keep shrinking. I've seen him lose tolerance for other activities he used to enjoy, such as going to a potluck. I wonder if he'll eventually lose all tolerance for in-home companions even if we keep him on his meds.

We've taken dad to a local adult day care. This is a great place for most people who go there but dad didn't like it because most of the people there were at a more advanced stage of Alzheimers than he is. We think he may be comfortable going there a couple of years from now when his dementia advances enough.

Dad has exercised his whole life and still goes out for jogs in the morning. He used to go out around 6 AM but lately he sometimes puts it off until after 9. I've never gone out jogging with him so I don't know if he has changed his route. Interestingly, he's still pretty good at finding his way back to the house. When we drive him some place several miles from home, if he gets uncomfortable, he just starts walking home and finds his way back, even in uncomfortable weather.

My mother, 81, has been bipolar her entire life, has usually treated it well with medication, but she has never been computer literate nor even understood official paperwork such as finances or legal documents. She buys groceries, makes meals, keeps the house and clothes clean, and drives herself and dad to doctor's appointments. Though she has gone through life with less capability than my dad has, her decline in old age has been slower.

Mom is most difficult during her manic episodes. During those, everyone in the world is wrong except for her, and she impulsively pursues unwise, extremely expensive ideas. She resents being given much information or being expected to take time to think through options because she believes she already knows everything worth knowing. Only by getting chemically rebalanced will she drop her bad ideas.

My parents are still physically healthy and I believe they could live for 10 to 15 more years.

I'm 40, single, childless, and still living with my parents. I'm an only child and our extended family live in other states. I never did well in college and I've only worked entry level retail jobs. I currently work in a grocery store. For seven years, during college and a job, I lived half a state away from my parents, with roommates. In the past few years my parents, and dad especially, have become much more needy so I've become more involved in caring for them. Several years ago my parents had an elder attorney write a will for them. They also gave each other and myself power of attorney.

For the past several years my mom and I have gone to a local support group for caregivers of family members with Alzheimers or other dementia. We all share stories of our loved ones' decline, and how much work it is to care for them. They give us a lot of good advice and local connections. Most of the members are spouses of the sufferer. I'm a child of the sufferer so my needs are different. I told this to the lady who runs the group and she responded by giving me the names and e-mail addresses of everyone in the group who's in my position, so I've written to them. My work schedule varies so I often miss the group's weekly meetings so being able to contact people any time with e-mail or forums is very helpful for me.

I've also attended many of the Alzheimers Association's support group zoom chats around the country. Most of the ones I've been to are for adult children of Alzheimers sufferers.

Yesterday during my church's morning discussion forum, someone talked about what different kinds of Medicare plans are and how to sign up for them. I took notes on those. Most of the people listening were elderly people who still had working minds and were shopping for themselves. I told the speaker that in addition to all of the complexity he described, I said that I have to do the shopping for two elderly parents who can't do anything for themselves and one of whom has a defiant personality, and that all this makes it far more complicated still. He said I should reach out to Florida SHINE, which provides info about Medicare plans for elderly people, and that they're probably familiar with my situation as well.

I've been stuck with my parents for too long. Caring for them is an enormous burden and they haven't even become physically disabled yet. As long as they depend on me, at most I can only move a few miles away so I can still visit them a few times a week. That would benefit my mental health a lot, but since I only work an entry level retail job I worry I'd go broke living away from them.

My mom is paying me a pretty good amount of money each month for caring for her and dad. I've been advised by relatives to ask for more for a financial cushion, especially since an elder home might take everything my parents have.

I'm getting so lost in the labyrinth of caring for my parents that I'm forgetting about everything else in life. I know I'm losing a lot of time I'll never get back. I keep hearing from friends and family my age about how they're well into careers and raising children. I don't hear that they're preoccupied with caring for their helpless parents. Some of them say their parents still take good care of themselves. I worry I'm too old to start what others my age started when they were much younger.

Taking a quick look at my notes I see that I need to access: dad's 401k, dad's pension, parents' Medicare plan, parents' IRS accounts, become both parents' Social Security representative payee.

Neither my parents nor I ever wanted me to be in this situation. We all hoped I would graduate from college, be able to move far for a job that would start my career, get married and maybe have a child. These goals always seemed reasonable because those are what my dad did, but I've done none of them. I described my situation to some friends and one of them said I sound like I'm falling into a cycle of poverty, too preoccupied with caring for my parents to save for my own retirement.

Please advise.

abc123

Hello Dean, welcome to the forum. I'm glad you found us! There are many wise and caring people here, some are highly educated and some are regular folks like me. You can get excellent advice and suggestions here and also just vent to relieve the pressure of caregiving. We do our best to support each other. 

From what you described, you really have a lot to deal with and I'm sorry about that. We all have moments of hopelessness and extreme sadness. We are only human. It's nice that your dad was such a smart, educated man with an impressive job but the job you have is just as important. I treat the men who work on my neighborhood garbage truck with the same respect I treat my local mayor and senator. To me they are equally important to my community. Your job is also equally important to your community. While it would be great if we all had a college degree, sometimes it just doesn't work out that way and I think that's okay. I admire you Dean. Your parents are fortunate to have such a wise and caring son. You seem to be doing everything possible to ensure your parents will have a safe future. Others will come along and offer you good advice. The most important thing I can think of is seeing a good  CELA. A lot of members here have seen two and then went with the one they liked best. A good CELA can help you get everything in order for you and your parents. 

I realize you are going through an incredibly hard time but please don't give up hope for your future. At 40 years old you still have time to accomplish whatever you put your mind to and you seem to have a great mind! I'm weeks away from my 62nd birthday and I haven't given up yet. There are members here in their 70's and 80's who give me hope and inspiration every time they post. Dean, I wish you the best that life has to offer. Please keep posting here.

King Boo

I cannot emphasize enough how important it is to find a Certified Elder Law Attorney (CELA)   www.nelf.org will yield a list.

Under certain circumstances, if you are providing care to keep your parents out of a nursing home for 2 years, you may be deeded the house and it becomes yours, and it is a non countable asset for long term care via Medicaid for y our parents.

But it must meet criteria, be documented, etc.

It could be a major assistance to you in having assets and a place to live in the future for yourself.

Iris L.

Welcome Dean.  I agree, you still have fulfilling years ahead of you.  I have a  few thoughts for you.

Do you have a degree? You can go back to your college or probably any college and request career testing to see where your strengths lie.

Don't discount the grocery business.  These are exciting times because of the changes in how food is being delivered to us.  Keep up with your computer skills.  Read about career pathways for the grocery industry and prepare yourself for that.  

Regardless of your daily work, you must manage your finances.  Follow the advice about investigating keeping your family home.  Think about your own retirement years and make solid plans. 

If you are interested in marriage and your own family, connect with me and I will tell you more.  This is not about a scam but good advice but it is off topic.  Many single and even married young adults fear spending their good adult years in a "holding pattern" of years not going anywhere in life.  There are ways to compensate but you have to strategize.  It's not too late for you.

Iris L.

Dean FL

Thank you all for replying and sorry for the late reply.

abc123, my parents and I spoke to a CELA several years ago. They put together my parents DPOA and will. I believe they also put together their LW but I'd have to look through their papers to be sure. I've been told by them and others that my next step is to get a thorough picture of my parents' finances so I'm able to determine what I'm able to do next. I hope to do as much as possible with my life with my remaining years.

King Boo, can you link to a web site with the criteria for my caring for my parents resulting in the house deed becoming mine?

Iris L., I've thought about career and college many times. I've been back to college many times. For some reason I just bring the wrong ideas, habits and attitudes to it again and again. When I imagine what I'd have to do differently to succeed where I failed all the past times, I imagine surrounding myself with different people. Maybe new friends, I don't know. I know that despite my dad being highly accomplished and both of my parents wishing the best for me, they did not instill the right habits and attitudes for me to succeed. Sometimes I wonder if I'd do things differently if I lived somewhere else, but I remember this SNL sketch about how we're the same person with the same thoughts and feelings wherever we go.

https://youtu.be/TbwlC2B-BIg

NizhoniGrrl

This is a tough situation for you, for sure. You definitely, first and foremost, need to get on top of all the finances. You should check with a CELA to make sure all the documents are in order and up to date for the current circumstances. You should be named as the trustee now. This might just be an update to the current living will. The update should show your father resigning as trustee. It sounds like your mother won't be a problem and will trust your making decisions for them.

Talk to the CELA about the house. As an only child, it should automatically go to you as the beneficiary of the estate. I believe it is protected as an asset as long as one of your parents are living there. If they both eventually go into care, you will be at risk of losing it, so start planning for in home care options, if you can.

Sadly, you are now becoming the "adult" in the house, with the role of the caretaker (parent), so do everything you can do to get on top of these responsibilities. I would start with a good sturdy notebook and start an inventory of all the accounts, amounts, assets, usernames and passwords. Buy a file container just for this information. Keep copies (or better originals) of important documents like the LW, etc., here. Just getting organized is half the battle!

And definitely, keep working, even if you don't see it as a "career" type job, it's important for your own mental health to have activity and connection outside of the home.

abc123

ttt

Paris20

I have two points to add to the good advice already mentioned. First, your father should not run alone. No one can predict the exact date when he will no longer remember how to reach home. All we know is that it WILL happen. Perhaps there are running groups or health clubs that can connect you to volunteers who will run with him. Second, you need to take care of yourself. Instead of paying you, perhaps your parents can give that money to a caregiver while you return to school and/or go to work. This need not be an all-or-nothing situation. You can be a part-time caregiver and part-time student or employee. I know how depressing life can be if you’re stuck as caregiver to seniors with AD. You need to reach out to find services in your county where you can get help. You cannot do this alone. Good luck