Navigating the Early Days of Dementia

Imagine if your friends and family started to treat you like you needed help with your day-to-day life. All of sudden, your spouse is taking over and trying to get you to visit the doctor, or your brother is suggesting that you stop driving. You have been living your life and all of sudden it feels like people you love are picking apart your lifestyle and over-stepping their boundaries into your affairs.

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You would be angry, appalled, frustrated and probably kick back.

Consider that if you are the family that is stepping in to help a loved one who doesn’t recognize that their behavior or thinking has changed. I frequently write about Anosognosia, which is the inability of someone who has a condition to recognize its existence. More complicating is if no doctor has even been seen to help diagnose the issue — particularly early on. The family and close network of friends are always the first to notice the changes.

If you do have a loved one that is having trouble managing their day-to-day affairs, assume they can’t recognize it. I always encourage families to get to the Primary Care Doctor and get a referral to a neurologist. There can be a host of reversible issues causing memory loss, and the earlier you see a doctor the better. The next steps are usually and MRI and a neuro-psychological evaluation.

However, you are already noticing a change in your loved one and are concerned. This is the toughest time to navigate. I feel like it’s human nature for the person to almost over manage their life and if there are truly memory issues then you often see a host of double paid bills or even what seem to be knee-jerk moves to manage their lives outwardly.

One client who was complaining of a tooth issue, scheduled and had her tooth removed and major bone graphing done. She was supposed to pre-medicate with antibiotics, which we know didn’t happen. Then, after the procedure, was given a prescription for a week of antibiotics and a daily oral rinse. Thankfully, a timely visit uncovered the hand-written prescription that could be fulfilled and now we are working to help ensure she completes the course of antibiotics.

I have been the one who stepped in. My parents would agree to something, a small change, and then undo any progress made within days. At first I was angry. Then I recognized that my parent’s were not doing it to minimize me or my help, but were doing what they believed was best for them. In most cases, I don’t believe they remembered the change made or why.

I see families and loved ones who feel thwarted and are upset. I get it. However, I just ask that you recognize that they are working very hard to manage on their own as they have for decades. I can now only imagine how frustrated they are to feel so challenged to do things they have always done for themselves and how it be hard to do. Considered.

2 thoughts on “Navigating the Early Days of Dementia

  1. I had this same experience w/my mom. She refused all help, assistance or discussion — as she was diagnosed w/on set of dementia. Here was a very capable and independent woman – and stubborn! and didn’t want her family nor anyone to interfere or “perceive that she was losing it”. I walked that line for 10 years. Every small step forward (having her add me to bank accounts, signing med HIPPA) etc. was reversed as soon as I left. And legally — there was nothing I could do about it short of taking her to court (a trauma and expense I deemed not worth it for both of us). What I did do was start documenting (diary) of everything I witnessed behaviorally and in her day to day operations. I then sent a copy to her PCP (he was her long time physician) along w/my letter of concern and asked for his assistance in including an evaluation at her next exam. I made “arrangements to visit w/her” day of her doctor visit and we went together. Her PCP spent the time for a thorough evaluation – and because of my diary — he was able to ask her poignant questions to corroborate what I had witnessed. This then got her initial meds (Namenda, etc.) but when my mom understood that her Dr diagnosed early dementia — she double downed. She refused to take the meds and continued to deteriorate.
    I also at that time would take her to the bank (she would sign me on accounts; then take me off days later). I met with the bank manager who knew mom well and we discussed her escalating dementia and my fears about her account(s). The bank was sympathetic but could not add me to accounts nor divulge any financial info without a court order and POA (which could only be invoked w/2 doctors saying she was incompetent — which was impossible, even her PCP was reluctant to sign off til things got desperate).
    I then also elicited social services for wellness checks as things progressed.

    Bottom line – I was powerless to do much. BUT I would urge others in similar situations to reach out and connect w/your loved ones’ doctor(s), bankers, lawyers, social services — even early on and make those acquaintances, keep the lines of communication open and current w/these folks. The banker, plumber, police would often keep me informed (long distance) and understood my dilemma and mom’s refusal for help. We were able to avoid some disasters such as bank fraud, overdraft, and keep bills, taxes paid.

    It is very sad to watch your loved one go thru this — but a lesson learned. I let me own children & their spouses know — don’t listen to what I say when I get this way — do what is best for me and don’t look back. I have POA, HIPPAs etc. in order; no secrets.

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