How do I balance Mom's independence with my duties as caregiver/trustee?

Amen

It is difficult to accept when your aging parent seems functioning but really not functioning cognitively. My 85 year old dad had been living independent for 4 years after my mom passed. I helped him weekly with shopping, meals, laundry and getting him to doctor appointments. In January, he was diagnosed with mild dementia, has total eyesight loss from glaucoma in one eye and bad vision in the other eye which changed his ability to be independent. It has been a hard transition for him as I was told by his doctor to take away his car keys. My dad would occasionally still drive himself to the store and his church which were less than a mile way from his home. I did not want to hear this either and let him continue to have his keys and drive. He fought me on this and I made an agreement with him no driving at night as his night vision was impaired. I believed he could see better than what the doctor's advised. My dad took the car out one day and hit another car in an accident. Luckily no one got hurt but realized he was endangering others and himself. Safety can not be compromised. Despite all of this he was still pushing his independence to other and an a older family friend would let him drive her car until he banged it up in a garage backing out. At this time, I sent out notices and reminded my dad he is NOT allowed to drive. I had to talk to him like a child because he was still convincing others he can drive and I was the mean one that took his keys. In March my dad had to have surgery, then went to rehab. After rehab he convinced me that he would be ok at home. The first week, I hired a home care person, his insurance sent out help for 90 minutes once a week and he seemed to be adjusting back well living at home. However, while going to get his mail, he fell outside and could not get back up. No one saw him on the ground of his driveway and he stayed for many hours until I got there. Again, thank God it was good warm weather while outside for all the hours outside. I moved him in with me. He complained but after having a couple of falls while going to the rest room, he came to appreciate me and my kids being there to help him. By July my dad was feeling much better with walking, his gait had improved, he was healed and feeling the anxious to move back to his home. I took him back and I would check on him in morning and at bed time. However, it was more exhausting to go over and prepare breakfast, give his medicine, go to work/errands and then go back for dinner. It was what he wanted and as his caretaker daughter was trying to make him happy. In the mean time, a relative wrote checks from his account and took all of his money even though we managed the account together. I was his POA but this relative convinced him to signing blank checks that he was not aware of.. Staying on top of their financial affairs is so important as there are so many leeches that come to prey on the elders. I realized my dad is not aware of the decisions he makes- no judgement or understanding of repercussions. I moved him to an AL which he liked for a few weeks and now wants to return home. It is the only place where he does not have to think about money, his meals and snacks provided, medication given and a social atmosphere for him. I know he is safe when I have to travel. However, he is now begging every day to go home and my heart aches at the thought as to whether to let him go home or stay. But I now know I need to get back to maintaining my own family and health. I want to make sure he is safe, fed, cleaned (incontinent), 24/7. I did not realize how worn out I was until he moved to AL. I got so sick..my doctor ordered rest. Don't let your elder parent quest for independence distract you from keeping them safe and their finances protected. In hindsight I should have done this sooner would have saved so many headaches and additional hospitalizations we had to incur because I could not say NO to him by convincing me he is good so he could keep his independence at home. Living at home with out a caretaker is not an option and it costs more to do this than going to Assisted Living. Now he has independence with a private room while knowing he is safe, fed and looked after regularly. As caretakers we need to have this peace of mind at times.

I can really relate to "a 5 year old with a check book and a cell phone" @magpark --I had to smile at that comment. I can also relate to the rest of the anguish in wanting to allow my parents their independence and dignity, while trying to manage my own life and sanity. I know my journey has just begun, and I appreciate the helpful and supportive comments. It helps just to know that I'm not the only with this situation.

Yes, it's very hard to make decisions and know when it's best, for their sake to do so! They do become childlike...and need to be protected from themselves!
Gooooood luck...and take care of yourself first!

Bless you and your family! Your situation resembles mine in a lot of ways. January 2014 my husband and I went to visit my mom (age 93 and 4 hours away) and knew we would not ever leave her alone again. In December 2013, when asked on the phone why she hadn’t called me about a particular issue, she told me (while in a friend’s car who took her to buy an expensive walker that she had asked my husband to get for her for free from her insurance company the day before) … “I was trying to be a good girl and not interfere in your life anymore.” That was The RED Flag!
After visiting for more than a week, we informed her that we were not leaving her alone again, and she needed to move closer to us. She had a temper tantrum – the first of three tantrums. I was completely undone. My mother was the most wonderful mother while I grew up – never an angry word, or sarcasm, or critical word. This was different . To her, I was standing in the way of her being able to live her life; I was “…strangling…” her. She is like a 5 year old with a check book and a cell phone that she has the ability to use. So far, her finances are in order and she is not compelled to overspend or overbuy.
By March we began traveling, with her, to our home for a week, then back to her house for a week. We had our own life to attend to. It was a time of living in hell. She made plans with her “friends” who are (50’s early 60’s) younger than I am - 70. Instead of telling me about the plans she made in a direct way, she would make sure that I was in the room and could overhear her conversation. Then she would repeat the meeting time and place out loud, and then never say anything about it to me directly. But when the day and time came, we were supposed to be ready to drive her there; with no communication between us. I thought I would absolutely crack under the pressure of her silent patterns; nothing could penetrate.
These “friends” of my mother’s have done and still do everything to help my mother counter all of my objectives and goals for how to help my mother and keep her safer. They still do not see the problem. My mother is very intelligent, and thus has been able to “cover” her condition from her friends well. She always has little words of wisdom to say to anyone who has a problem to share; she is a good listener, hence rarely talks about herself to others. That one way of manipulating others gains her very loyal, unsuspecting friends who are more than willing and ready to help fend off her “evil daughter.”
We stayed with her through the end of July when she finally moved into an AL place near us – back where she grew up. Now she has the privacy to make all of her phone calls whenever she wants, she has professionals to help when she needs it, and she is getting three meals prepared and cooked by a restaurant chef, and she has access to a driver who will take her wherever she wants to go; that last part is a little scary. It is “supervised independence.”
By the end of August I was diagnosed with adrenal fatigue and spent the next 2 ½ months on the couch waiting to recover from the condition. I am now on the mend, and am able to take care of my daily activities on most days. The only way I could have avoided this was to get my mother into a facility near me earlier in the year. I didn’t push her because I wanted her to make the decision – for her to be a willing party to the change. That was a mistake. It took a very long time for me to be able to fully believe that my mother had cognitive decline of a deep enough level that made her life unsafe.
The downside of my mother living in AL is that I can no longer listen in on her phone conversations (an instruction from my mother’s trust attorney) to get a heads-up on her plans and what she really thinks about me, etc. Also, I will never know when or where my mother goes during the day, or with who she is going with or meeting. The upside is that I have my life back, and I now have no trouble saying “NO” to her requests when it is necessary. I learned how to disengage from her. I only call her when I have important information to share – never just to call to catch up or check in with her like my friends do with their mothers. I take her to all of her doctor’s appointments (she does not tell the complete story to doctors and it is important to be there to take notes which I give to my mother to lessen the confusion she generates) and pick up ice cream and chocolate and prescriptions when I do go to see her. Sometimes we go for a visit if I am not going for an appointment for longer than a week or two.
This whole situation is very difficult no matter how much preparation you have made or how little. My conclusion is this: when my parents were raising me, it was their responsibility to care for my needs. That fact does not make it my responsibility to now take care of all of my mother’s needs. Where does the responsibility then lay? It was the responsibility for my parents to plan and prepare for themselves in old age when they were younger; the where, how and when of their futures so that I would have known what to do for them and when. Thinking that you will live in your home until the day you die is unrealistic. Conditional parameters need to be set in place in advance. Since my parents did not take responsibility for themselves, it made it critical that I step in and make those decisions for them – in this case, for my mother as my father passed away in 2007. In this scenario, I would have been correct in making the decisions for my mother and not waiting for her own, independent decision about moving. In January 2014 I was too intimidated by her to do that. And I paid for it with my failing health.

Thank you for the many quality comments and feedback! I am blessed by your willingness to share your experience and advice.

That is a great idea. I will check that out.

In our area...we have busses for seniors...they would pick my mother up daily for lunch at a price of $1.50. The senior facility always had at least 30 people for lunch Monday thru Friday. She always had a nice time socializing and was happy when she got home. Also...seniors still think they can do everything, even when they can't!! Let them do what they can...and just tell them that you could help them with some of their activities. You will have to put your foot down at times...or you will suffer the consequence of not taking care of yourself first!! Lots of good advice here...take care!

We were doing that for our 87 year old in 2007, but she never wanted to be put anywhere, Al or anywhere...the other siblings did sell her home and she has cash assets, trust or not. The trust is for long term care, so medicaid will pick up where her assets leave off. She participates in Adult daycare twice a week so I have a break, if you decide to keep them at home, it doesn't get any easier, we are soon to celebrate our third year of saving her from a AL, because her kind of dementia means she doesn't eat proper and doesn't fall into the 45 minute facility policy, they allow for eating. Ours is not a rare circumstance, the eating part...AL is limited, nursing homes are limited and while we hear that they feed people, they do not feed our 87 year old because they think she can still answer for herself...she is right now in a rehab NH for having the flu two weeks ago, I say bring an early tray, they do not, we walk in on her knitting instead of eating and what...they are going to feed her, please...we see them wanting to pick up her tray with no assistance in eating. Our day is getting her through hers...pick your battles and you decide what is right for them...

sorry iI didn't see the link for asking a new question.

my husband has dementia. He roams the house looking for something, he doesn't know what and I have no reference point to even begin to guess. He expects me to find what he's looking for and gets very frustrated when he can't find(what ever). What can I do to calm him down and get him to stop hunting?

This is a good topic because I moved in with my mother three years ago to help her with my father's care needs and now a year ago my father passed away. I have been working with my mom to help her make sure that her bills are paid, she gets good healthy nutritious meals, and to help her with handling her affairs particularly with my father's estate affairs. I want to be independent and she wants to be independent, but I feel with her memory issues that it is not a good idea to leave her in the home for a long period of time. I would like to bring in a companion to assist her with meals and driving, but she refuses. She also needs to help me with her finances , but she prefers to spend the time outside walking around the neighborhood for three to four hours, she wants to sleep in the mornings, she wants to watch tv in the evening. I feel I am being left to manage her financial stuff on my own. I just feel like to care for her house, to care for her personal care, to manage her financial situation is a full time job.
I am running my self into the ground. I want to find an alternate solution.

With your daughter desire to take over and run your lives, I am getting the same feel from my mom. She wants me to control the finances so that I will not be in the dark when she dies, however she does not want me micromanaging her life. I would seek a social worker to have a conversation with you and your daughter and see if you all can work out a healthy balance. Be very clear of the boundaries of what you want your daughter to help you do accomplish and if she does not respect your wishes than tell your daughter you will get someone who will respect your wishes to assist you.

I think it is a great idea that your mother is active. It is encouraged to encourage your mother to be as active as possible. I think it is important to decide if your mother and father should continue to live their lives in your home, in day care or in assisted living. Depending on your father's stage of dementia, it might not be a bad idea to have an assessment done and determine if he should be placed in assisted living or nursing home. One thing to consider is a care facility with multi levels from Independent to full time care because it can be very costly to transition you loved one from assisted living to intensive assisted living to nursing home. We expenenced that with my father who had vascular dementia and as his care needs intensified, we had to move him to the appropriate setting. These care facilities have policies as to what type of care they will accept. It is also good to consider keeping your parent's together as a married couple because it was a tremendous strain on my mother once my father was moved to a care facility. If your mom is 65 , it is an ideal time to get her LTC insurance. John Hancock or Allstate offer good policies.

Hi Lizann,

Right, the calendar! That is such a good idea.

Unfortunately for me, I waited to long to do the calendar. When I put it on my mom's dining table, she moved it to the littlle space between the wall and desk and hid it back there. Why? It "spoiled the decor." LOL!

I agree that either adult day care or assisted living could be good options.

If your community has good AL facilities that could be the best choice for the long run. Your social mother would have all kinds of options for activities and she could schedule time with her friends right there if she wanted. Also, many have "stores" for shopping where the spending can be better controlled without you looking like the bad guy.

Seriously, you have to look at what this arrangement is doing to you and your core family. Your whole life is spent juggling and cleaning up your mother's social and financial messes. This doesn't sound like a good long-term plan.

Does your mom know anyone in AL? If so, that would be a great "in." If the person enjoys the place (not everyone adjusts but most do), then take your mom to visit her friend and get a tour.

We're all wishing your the best blueskyhi. Please keep us posted as you go along.
Take care,
Carol

I like the adult day care idea, send both of them to it if possible. The county where we live does it on a sliding scale depending on income. Also is your father a veteran? He could qualify for up to $1800 per month in VA benefits. If you haven't sold their home yet, they may not have the assets that would disqualify them. If the home is sold and the money is liquid, it can be put into a trust to help them qualify. There are advisers who work with the VA at no cost to you if this is a possibility. My mother has retained her home, although she now lives with me. She gets a VA payment of $1100 per month as a widow's pension. She has less than $5000 cash reserves so she qualified.

On a different side of the question -- how can I get my daughter to understand that we need to be as independent as possible? We are both mentally allert but have some physical disabilities. My husband lost his driving privileges due to LBD. She wants to take over and run our lives.

I would check out adult day care facilities for your mother as she seems to like to run from one activity to another. Your father might be eligible for a daycare program if he isn't experiencing too difficult mobility issues. There she would be supervised and it would free you up during the day hours to work outside the home if you are employed.
At only 68 years old, I think she is rather young for assisted living or nursing home placements as most of these folks tend to be over 80 or over 85 years old plus it is a rare assisted living that can properly handle a person without
the mental capacities.

I would get mom on a schedule because otherwise you will be running around full time trying to unscramble the schedule of events she has set up with her friends. Perhaps she will be happier knowing on Monday I do x and Tuesday I do y etc. I would map out her week on a calendar and have it for her to review given her need to be reminded, it might give her comfort having the calendar.

Hello Blusky,

Wow, I am really touched by your situation. You are doing a great job and are asking the right questions.

Your situation is tough because your mom is so young and your dad has dementia already. Give yourself a pat on the back for jumping in with both feet. The period you are in is, for many families, the danger zone: the period from the onset of the disease until the family finally raises the alarm. For many families, this can be ruinous, with elders spending ALL of their savings or having accidents and incurring terrible liabilities. By stepping in, you are precluding these sad fates. We all know that this is not easy. It stinks, in fact, but it is the lesser of two evils.

As was mentioned above, it is very hard to make the tough decisions that "feel" like a Mexican Stand-off with your parents. That was very hard for me. What made it easier was the realization that this "unique" situation (for me) is actually routine for professionals. They see it every day, it is no big deal, they know that an ounce of prevention is worth a pound of cure. So talk to lots of professionals. The Agency on Aging really helped me a lot. The more you hear professionals repeat the same advice, the easier it will be to do what is necessary.

There is very good advice on this thread already but let me add just one thing. You wrote:

scrambling to confirm times, dates, places to either fulfill what she is trying to achieve or to coordinate plans for her. She doesn't realize that I am operating in the background to ensure her safety and to prevent miscommunication with the others that she is making plans with. This has my own schedule turned upside down, as I'm having a hard time keeping up with her. My own life is in a shambles, as everything is revolving around my parents' needs now.

It would be very helpful for you and your family if you would stop running interference like this. First, it will wear you out in no time. Second, your mom and her friends need to face her limitations. So, sit back, fold your hands, and let her mess up some appointments. Let her and them get a real taste of what it means to have days spoiled by miscommunications and memory loss. I had to laugh when I read your story because I did the same "interference running" yesterday! My mom plays bridge very day at the AL but at lunch, she did not remember when her game was or if she had a game. I ran in a panic to the activities director to find out when it was. Turns out, they just go and get her every day.

My point is this: the faster you let your mom actually experience the "pain" of her limitations, the faster she will realize that she has them, and the faster she will consider AL.

Good luck and a big hug.

Also ask your attorney how to legally transfer their assets before senior housing placement and how handlung their financial affairs will impact you. I.e. taxes/income/their debts current and in future.
Ask specifically to be POA current and medical advocate. trustee verses guardian pre and post their passing.

You are handling a lot and with much love.
Assisted living is a great option.
You may also try to find a home health aid that is covered by some insurance via doctor referral under Alzheimer diagnois for seniors on fixed incomes. I.e. home health services include compassionate care, social outtings, medication management, etc...4 hours min. Per week under medicare guidelines with doctor referral for home health services.
Best of luck.

Kudos to you for what you are doing to orchestrate this whole thing....No question in my mind that assisted living is the way to go...You say your parents do not have much in the way of assets....It would not take long to spend them down to medicaid eligibility if you can find a AL home that accepts it...I talked to the Medicaid people in my county a couple of years before applying for it for my wife...My impression is distindtly that they truly wanted to help..I also went to an elder care lawyer for help with the application..

Hi. My mom is an AL is So Cal. It is $3775/month. (Memory unit, she had dementia). Her social security is $1,275/month. Luckily she does have a LTC policy that pays $3,160/month. I would be surprised if you could find a private pay facility that would be covered by social security. Please talk to an accountant and figure out exactly how much money and assets you have to work with. Good luck

Blu, I understand wanting to preserve assets, especially with your mom as young as she us. There are some ALs that will accept medicaid, if you come in as private pay for some number of months or years.

I can hear you saying "huh?" Start reading about elder care on this site, then get a sense of what is available, in your area. I started out making LOTS of assumptions about my mom's care. Try to get actual information, and go on AL tours with your folks, if you can.

Bluesky, just by approaching this so conscientiously you're already doing more than many manage, I'm sorry to say. I was going to post a one word answer to your question how do you balance her independence: "carefully." But you are anyway.

It's especially difficult seeing how young and sociable your mother is; but if Pam's advice is that their funds should cover ALF then for once we could be reading about a cared-for mother who will really embrace that kind of lifestyle. Sell it to them as a positive choice, rather than a wits'-end avoiding measure. Someone as active as your mother sounds could even find that she feels more independent having her own address than she does living under her daughter's roof.

Meanwhile, given your mother's level of mental incapacity but enthusiasm for spending, you should err on the side of caution with their money. You can and will be held to account for that; whereas restrictions you're forced to impose on her, even though you correctly find it distasteful, are a lot harder to quantify. Anyway - the mere fact that you won't unless you have to means you'll get the balance right. Sometimes being the bad cop is plain necessary. I'm not sure she should still be operating her own debit and credit cards if her disease is well established, by the way - look over your POA terms, perhaps? You might have to cut them up.

Thanks, Pam, I will look into that. I was under the impression it would be very costly and didn't want to drain their assets before the more critical care would be required (i.e. nursing home). I was also concerned about them (there's two--mom AND dad) would feel if I were to suggest this. I feel they would be insulted or feel I am abandoning them. This is all new to me.

I would say she is well suited to Assisted Living. They have a whole lot more going on every day than you could possibly provide at home. With their combined SS, it should be very do-able. They really do enjoy the extra company at meals. Mom's ALF has 10-15 bus trips a month. Look around.