Early onset: navigating caregiving AND parenting simultaneously

Mollykazoo

Lately, I've been feeling more ready to wander around these forums and read about the struggles and heartbreaks of other caregivers. We are fairly new to this reality and I'm finding acceptance of our circumstances little by little.

I recently found the Dementia Behavioral Assessment Tool (DBAT) and it's given me such a feeling of perspective—FINALLY, a guidepost that gives me some notion of what we're facing. Obviously, each person's experience is different and timelines are totally individual, but this tool helped me assess and understand where we are and what might be coming. I attached the DBAT here for anyone who is unfamiliar and interested. In filling out the checklist, I believe my DH (age 56) is in stage 4. He's no longer working (as of 3 weeks ago) and so, during this summer break, while I'm at work all day, he's home with our 11-year-old daughter and doing very little (any??) actual "parenting"…sometimes I come home and realize that he hasn't made her any food or done anything else that resembles parenting. She's resourceful, so she isn't starving—but still, it worries me. Before this current stage, he was an active and helpful parent.

This same daughter begins middle school this fall and I have no idea how to tell her what is coming…since I hardly have a handle on that myself! As I read posts by caregivers dealing with more severe stages of the disease, I'm finding it impossible to imagine myself dealing with all those difficulties while I also focus on and attend to my child. My imagination is going wild with horrifying scenarios and just a general fear of my daughter (and my other two kids who are 18 and 21) just getting lost in the shuffle or traumatized or constantly faced with the horrifying grief of losing their father little by little. Will they even want to be at our house?! Will they be safe?? Will there be enough time for me to work at all??

On the bright side, my 21-year-old daughter lives at home. She is on the autism spectrum and struggles a lot with executive function, so she's not really great at SOME things, but she loves her little sister and takes her out in the world and sometimes spends time with her.

I realize that it isn't healthy to live in this place of anxiety and imagining worst case, but I'm also aware that my DH may need to go live in a facility sooner than he would otherwise, just to protect my kids from the ongoing hell of their deteriorating father.

I'm not sure I have a question—just contemplating the ENORMITY of all this change and loss and fear and hoping to hear that somebody understands. Perhaps can offer wisdom about some small piece of this??

thank you for being there!

Molly

Dementia Behavioral Assessment Tool.pdf

Iris L.

There is plenty of material to explain dementia to children, tweens and teens. You might find that your 11 year old can develop an understanding. It is important that she understand that she is not responsible for any of this.

Iris

M1

Molly, is your 21 year old home with your DH and your 11 year old? It gives me pause if he's there with her by himself.

dancsfo

Molly,

I agree that protecting your children is high priority.

As a transition stage before your DH goes into a facility, do you have anyone who can help you, even for a few days a week? I ask, since you want to keep working, and the needs of your DH and children continue, it'd be good to find a way to give yourself some help.

SDianeL

so sorry you are facing this. When my husband was stage 4, the nurse evaluating us for caregiver support from the VA asked my husband what he would do if a fire broke out. He paused a long time then said “I would try to put it out” Later she asked him was there anything else he would do and he paused a long time and said no! She told me afterward that under no circumstances should he be left alone for no length of time. He would not know to get out or call 911. I never left him alone after that. This forum is the place for answers and support.

ButterflyWings

Sorry that you are facing this. Glad you found this great group of experienced fellow caregivers. There are many EO spouses here who have navigated the very pressures of raising young children and a rapidly declining PWD LO that you are facing. Your concerns about your young ones are very valid.

I would not leave my 11 yr old to supervise her DD if I were you. That is the reality now. It is not the other way around. He is not capable of parenting her, in Stage 4 unfortunately. Definitely not alone. He needs supervision himself. The most complete DBAT publication has a "Nursing" notes section at the end of each stage and you will see for Stage 4 that he is a risk to himself (and thus others) in many ways, sadly. Driving, foods/cooking, etc. Even for young adults on the spectrum the time comes when they can't cope with the stress and chaos of PWD LOs. I had to separate my two special needs LOs by late Stage 4, early 5.

You might also get some good advice and resource information from the Alz 24/7/helpline 1-800-272-3900

Mollykazoo

Thank you all for your responses. We are most definitely at a phase of change that we haven't yet caught up with. My 21 year old is almost always at home and is another "adult" the 11-year-old can go to. But, admittedly, her capacity to be helpful is somewhat limited. Also she begins university in the fall, which will make her even less available. My 18-year-old is super reliable, caring and helpful and he is home and available some days, but also is working a lot this summer to save up money to pay for a big gap year of travel in Europe and Asia (he leaves in September). Thank goodness I have a fairly flexible work schedule because I work for my dad who is understanding and supportive.

We had an impromptu and emotional talk with our 18-year-old this weekend wherein he asked his dad if he was scared which led my DH to tell him that he's grappling with some fear but that he's mostly scared for all of the people he'll leave behind. He also talked about how he's finding acceptance and beauty in living in the present moment. Our son told his dad how worried he is that, when he travels next year, he will miss precious time with him. And my DH was able to really encourage our son to take and ENJOY the trip. There were many tears and it felt like a valuable conversation. Also, the reality of our daily existence these days is a feeling of heaviness. We are definitely ALL struggling with depression. It's impossible to believe some days.

I also talked with the 11-year-old about what to expect from her dad and explained that he would be losing more and more of his ability to remember things. She responded with horror and inconsolable sobs, naturally. She asked multiple times if he would forget her. And she asked if he would die from this disease. I had to tell her that, Yes…eventually he would forget many, many of the things he knows now, including people. And, yes. He would eventually die of this. It was so difficult for her to accept that I couldn't tell her WHEN to expect any of these things. One resource I found is a book aimed at middle-age kids called "Sticky Notes" by Dianne Touchell. It's about a 10-year-old boy whose father has early-onset AD and it has very good reviews. I feel like the VAST majority of similar books I've found are about dealing with a grandparent (not a parent) who is afflicted with AD, so this book is rare. I've linked it here, in case others are also searching.

My DH had a spinal tap last week in preparation to start Leqembi. We are trying to feel hope about the potential of that treatment giving him more time as himself…but for me that hope is pretty shaky.

A lot of shifts are coming very soon. I see now that I will need to work from home much more that I previously have…especially while my daughter is home for the summer. I will also need to insist that my DH not drive anymore—a reality that, at this point, most people in my house have not faced. He rarely drives, but inevitably the youngest kid talks him into taking her places—this has been a TOUGH ONE, but I'm ready to make the announcement that we can no longer let dad drive. :(

thanks to you all—

m