In between stages

Karini Maximoss · June 22

Hi. I am new to this site. Actually I don’t know why I never joined despite my being aware of its existence. My father was diagnosed with Alzheimer’s and quickly progressed in his disease. He was then diagnosed with Parkinson’s a passed December 24, 2021. This all transpired in about 4 years. After he passed my brother and I (only children) noticed a change in my mother with forgetting and repeating things more frequently. She too has been diagnosed with Alzheimer’s. My husband and I moved my parents into my home (when living in Maryland) when my father became too much work for my mother to care for on her own. Mom still lives with us (now Southern NJ). Mom seems to have progressed quickly in the last 4 months. We are from the Dominican Republic and she has been fixated on going to the Dominican Republic on her own with a one way ticket. Her neurologist, family, as well as my brother and I don’t believe it is safe or reasonable for her to travel alone (the neurologist had her license revoked an told her she can not travel alone). Mom needs for me to check her medication as she has been incorrectly filling her pill box. She forgets about money she has or people she has already paid for services that may have been done. She is not being reasonable. She is no longer the mother I know. I am her primary caregiver and have told her I will not partake in arranging this trip she wants to make. She forgets most things even within minutes but does not forget about wanting to go back and o Dominican Republic. I don’t know what else to do. She is at a point where she consciously knows what she wants but again is not reasonable. She is not at the stage where I can just go along with her idea and just tell her tomorrow or next week and then she forgets. She even got very aggressive with one the last time I tried to reminder and reiterated that I will not buy the plane ticket for her. She told me one of us was going to die that night. That I spoke to her like I have never spoken to her. She said I have treated her like garbage. I know it is the disease talking but still hurts all the same. She is stuck in the house most days and know this does not help her. I found a senior center and other ways of getting her out. She refuses any outlet I give her because all she wants to do it go to Dominican Republic. I have changed phone number in her cell phone so she can not contact a travel agent friend. I have communicated with family in the Dominican Republic to not encourage her when she speaks about this trip. Yesterday I was able to get a hold of her phone and block as many airline websites I could. She has been able to figure out how to get on the websites and my children have told me they have heard her on the phone trying to book a flight. She asked me for her passport the other day and I lied and told her I don’t have it. I feel so guilty lying to her but I really am at a lost. My mother has always been a very independent, strong willed person. Because of this personality I believe is why we are having such a hard time with her compared to my father. He was more reserved and quiet. So he did not fight us and just went along with what was needed to be done. I am sorry this is such a long post but I just hope I can get some support from other who are going through this. First my father and then almost immediately my mother. I can’t believe I am going through this again. My heart breaks for her as well because I can’t even begin to imagine the pain and difficulty she is dealing with as her life/world is being turned upside down.

JulietteBee · June 22

I am so sorry to hear of your distressing situation. For one to follow so quickly on the heels of the other is heartbreaking.

My first suggestion would be to hide all forms of payment: credit card, debit card, and checkbook. Deactivate PayPal, Zelle, Venmo, Klarna, etc.

I also find it reprehensible to lie to my mother, but with this disease, "Therapeutic Fibbing" seems to be the only way to break our loved one from fixating and obsessing over any one idea.

Secondly, you may tell her her passport has expired. She may ask for proof and request to see it.

Thirdly, you could tell her international travel rules have changed and it now requires a valid driver's license AND passport. As her license was revoked, she would not be able to travel.

If she is as shrewd as you say she still is, here is the most drastic of measures you can take. If you know her travel days are permanently over, go ahead and deface the passport in some way and tell her she will need a new one. Tell her you will help her to get one but keep kicking the can down the road due to scheduling conflicts and until that fixation abates, which it will.

My mom was fixated on her bank account. That was one of the most frustrating 9 month period of my caregiving journey. Now, it is as if she forgot she even have bank accounts.

Last ditch effort if all else fails, go behind her back and thwart her plans. Request that her doctor writes a letter explaining why she cannot fly. After obtaining the letter, submit it to the airlines and use it as reason to cancel her flight and have it refunded.

All the best and please update when you can. We are glad you found your way to our group.

H1235 · June 22

Welcome. I’m so sorry you need to be here. Many with dementia have anosognosia. This creates so many problems. We all want our loved ones to maintain their independence and be happy, but safety has to be the most important concern. This means taking away independence. This in turn not only causes unhappiness, but anger. But it has to be done. Given the symptoms you are describing, I believe your mom has way too much independence. In my opinion at this stage she should have absolutely no access to her money. Credit cards, debit cards, bank statements should all disappear. Let her think she lost them. If she has no access to a card she shouldn’t be able to book a flight. To be honest a plane ticket purchase may be pretty minor, some here have lost huge sums of money because a loved one had too much access to money and made very poor decisions. Get her a phone that doesn’t have internet access! Take away anything else with internet access. You should be managing all medications and she should have no access to it until you set it in front of her to take. My mom is also at that limbo stage where her memory is still pretty good, but decision making is very very poor. It’s hard! Mom is very angry with me. But I know she is safe. I would talk with her doctor about medication to help with her anger and anxiety. I would recommend you no discuss her limitations or why she can’t do various things. Side step as much as possible. As I said, let her think she lost her cards, disable the phone and tell her you will replace it for her. If she gets paper copies of bank statements switch to online statements. I can see why putting the trip off a few weeks wouldn’t work. My mom always wants to be taken to her house. If I were to tell her we will go next week, she would remember and be waiting by the door. What about putting it off for a year. It’s not a good time of year to visit, we can’t find your passport and I’m having trouble getting it replaced, you don’t have the money for the trip, there was big storm let’s wait til damage has been repaired, flights are very expensive this time of year… Get creative. I will attach a few resources that may be helpful.

Anosognosia and Dementia - AgingCare.com.pdf

https://iona.org/therapeutic-fibs-ok/

Quilting brings calm · June 22

I would blame the neurologist. Mom- the neurologist said you couldn’t drive AND that you can’t fly. Not just that you can’t travel alone, but that you can’t fly. Make up why - mobility, language, need physical therapy, etc, etc.

Also-if you are in the USA- use political unrest as an excuse to avoid international travel - various wars, police actions, sanctions, etc.

sandwichone123 · September 13

I wrote this some time ago, but it didn't post. My answer would be some contrast to others. I would help her plan the trip for "in the Spring," or "in a few months," or "when the international situation improves." Say yes whenever you can for whatever you can, and planning a trip for some future date is both safe and happy. Some say the planning is more joy than the trip.

I would also remove all contact with money and credit; lock her credit if you can so she can't be scammed. She needs supervision, but with all the losses she is experiencing, planning for a trip is something she can still do.

In between stages

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