Living with a parent with early onset dementia

kontara

Hello 👋🏽

I am new to taking care of a parent with dementia. It has been a complete struggle for me. I am a single mother to a beautiful son who is diagnosed with autism. My mother was told by her doctor that he is taking away her drivers license and has asked me to “hide” her car. She is now questioning me about her car whereabouts. I don’t want to keep explaining to her that her Dr. doesn’t want her to drive. What do I do in this situation? I feel so guilty but I want her and other drivers to be safe.

harshedbuzz

@kontara Hi and welcome. I am sorry for your reason to be here, but glad you found us.

Dementia is a challenge for any family, but Early Onset adds an additional layer of difficulty as it falls on adult children at a time in their lives when they need to be establishing their own careers and families. Add in the challenges of being a single mom to a child on spectrum and you pretty much hit the trifecta of awfulness.

It's great that your mom's doctor took one for the team and stopped the driving. Many physicians leave this critical safety measures to families to navigate themselves which sets up an unnecessary adversarial situation.

It's hard to answer your question about what you should do without knowing more. There are more moving pieces to your situation than most.

What's the living situation? Does your mom have a spouse? Do you have other siblings at home or local to you? Does she live with you or you with her? Are you employed outside the home? Do you have the legal means to make decisions on mom's behalf (a DPOA or guardianship)? How old is your son and where is he currently in terms of presentation? (Full disclosure: I'm a fellow ASD mom and found it necessary to protect my son from dad at times when he was younger which will color my thoughts)

IME, driving is a huge deal to adults and many PWD never get over not driving. As hard as this is, you are doing the right thing preventing her from driving. Aside from the moral obligation to prevent harm to others, were she to be in an accident AMA it's very likely her insurance wouldn't cover the damages, and she could be sued for everything. My mom (no dementia) was sued after rear-ending someone. The process took a couple years during which time a PWD would have progressed further in the disease and would struggle to testify.

Dad talked about getting his license back constantly. He tried to con every doctor we ever saw into saying he could drive— his urologist, mom's MOHS surgeon, the PCP and even the dentist. She might never stop talking about this; the very last conversation I had with dad hours before he died was me promising to drop off his car at the MCF in case he needed to go somewhere.

If you are mom's POA/guardian, you have an obligation to manage her money prudently. Where's the car? Generally, it's best to sell the car if it has any value as it is a depreciating asset and requires maintenance and insurance. The standard answer about where a car is, is to tell the PWD that it's been recalled and is in the shop awaiting a part delayed by a supply-chain issue.

I get a sense that you may be so close to the situation that you fail to see the bigger picture. Even with EO, which tends to progress more rapidly, you could find yourself in the role of hands-on caregiver at a time when you should be focused on your future security and son's best possible outcome. Perhaps you should place your mom in a MCF and transition to a more supervisory form of caregiving.

My situation was a bit different than your. My parents and I were older when dementia hit. Mom did most of the hands-on caregiving with me managing logistics of moves, medical care and support. Despite my secondary role, there were times when I wasn't as available to my son as I needed to be. Dementia is distracting. DS lost traction in launching into adulthood and we're trying to get him back on track. I deeply regret this.

Good luck. You have truly been dealt a difficult hand.

HB

psg712

Hi kontara,

It's actually pretty convenient to blame the doctor for stopping your mom from driving. My mom fussed and blamed the doctor about it for a while, but it took some of the heat off me.

I waited too long to sell her car as I was out of state from mom at that time. By the time I sold it, it was barely drivable and she got little money for it. She was able to remember for a while that I sold it and frequently brought up the fact that she had to rely on friends to take her places BECAUSE I DON'T HAVE A CAR! even though by that time she hadn't driven in months.

I have a young son too. Although he is not on the spectrum, I still find it hard to balance his needs with my mom's. And I have a supportive spouse. And my mom is now in memory care. It's still a lot, and you have more. The earlier stages of dementia are harder, in my opinion, to manage all the logistics and changes in the relationships. If you don't have siblings or other family to help, I hope that you can find some friends or therapist who understand and can support you. Put on your own oxygen mask first - easier said than done, I know. We are here for you too.

H1235

Welcome. I hate to say it, but answering questions about the car is probably just one of many things you are going to need to do that you don’t want to. I wouldn’t worry about being honest I would worry about what causes her the least upset and stress. If you can change the story to “it’s being repaired” or something else and she seems more comfortable with that, then go with that. If she hasn’t assigned a DPOA, don’t wait. It’s important and you will need it.

Quilting brings calm

I’m glad you found us. We want you to know right now that it’s a must to give you and your child’s needs as much consideration as your mom’s. In fact it’s necessary to take care of yourself. Who would advocate for her if you were too ill to do so?
By this I mean that it’s also ok if you feel at any point that you need to get her into a safe environmrnt such as assisted living, or eventually memory care. You will find a good mix of people living with their loved one with dementia and others who utilize AL or MC. It’s whatever works best for their situation.