Mom was diagnosed with Alzheimer's in August, although she had been struggling with confusion, disorientation and depression for at least 6 months prior to that. Once it became clear that she could no longer manage finances or medication, she and dad move in with me and my husband. Dad has a bit of dementia, is hard of hearing, has COPD and other health issues. Both do not drive.
Our place is cramped, and transitioning mom and dad out of their home was difficult, but necessary. I have been working with their trust attorney for guidance on my responsibilities as trustee. They do not have much, so ultimately, I was told that I am to preserve their assets for their long term care, since the do not have a plan or LTC insurance in place.
Mom has always been extremely active and is still in very good physical health at 68, so she is restless and in denial of her condition. She also seems to be in a sundowning phase, does not want to sleep, gets up frequently through the night and rises early in the morning. Nevertheless, she still wants to get out so she is constantly calling friends and family to take her to places or just to get out for coffee, lunch, movies, shopping. She is an impulsive shopper and because of the dementia, frequently purchases duplicates or items in excess. I end up having to run around returning items. At their attorney's suggestions, I even had to have mom and dad give me their debit and credit cards to hold, because neither understand that there is a budget and will spend without regard to what is necessary or reasonable, often resulting in overdrawing.
She also makes plans to start a Bible study, go on an outing with friends, start a new project, and just announces these things to me. I end up 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.
My challenge is in trying to allow her to maintain as much independence as possible, without driving me and my family into the ground. Although it's my responsibility to manage their finances, I struggle with telling them when and how much they can spend, even if it's to preserve for their future care. I feel like they see me as an ogre trying to control their life in an already unpleasant situation. Additionally, mom has become deceptive telling tales to get her way. My sister and I have had to cross-check with each other to keep the stories straight. I don't know how much longer I can manage!
Gooooood luck...and take care of yourself first!
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.
I am running my self into the ground. I want to find an alternate solution.
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!
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
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.
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.
Ask specifically to be POA current and medical advocate. trustee verses guardian pre and post their passing.
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.
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.
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.