Possible Dementia-First Steps

[Anonymous]

Anonymous wrote:

Anonymous wrote:Do not leave this person alone. Must be monitored 24/7. Sorry.

Absolutely no driving. Hide the keys/their license. Remove car battery if you must.

No showering w/o supervision and I suggest a shower chair. No up/down stairs without assistance. No in/out bed without assistance.

Likely a written memory type standardized test will be administered in office.

Make certain DH or other responsible party takes notes during appointment or record on your phone.

Good advice, to which I’d add:
unplug or disable stove.
Install scald guard on bath and faucets.
Remove or cover mirrors.

Can you explain this? I’m dealing with a recently diagnosed parent and the other parent is both in denial and covering up for spouse and has been for quite some time. The other things mentioned make sense, but why cover up mirrors? Do they get startled or scared of their own reflections?

[Anonymous]

PP re: can’t be left alone.

My mother left my newly diagnosed w/ dementia father alone for two hours. She had been advised never to leave him alone but was in denial/wanted to be with friends.

While she was away, he got out a step ladder they kept in their carpeted closet and decided to climb it to change a light bulb in their upstairs bathroom. My mom arrived home and my dad was splayed out on the floor writhing in pain.

Rescue was called and he had to be lowered down their winding old staircase by some system of pulleys. Took over 30 minutes to gingerly get him out to the ambulance.

He shattered his hip. Wasn’t expected to survive to have surgery. He did and lingered for three grueling years in a near vegetative state in skilled nursing.

All because my narcissistic mom was in complete denial and refused to let my dad’s new diagnosis change her lifestyle in any way shape or form.

[Anonymous]

No DIY eldercare. Call in the professionals and use every resource available like adult daycare, respite care, visiting nurses. Limit having to transport the dementia patient all by yourself because this gets incredibly more precarious and time consuming and stressful for all involved.

Do not try to cobble together family members who can “help” provide supervision and care. This isn’t anything like childcare or babysitting and is unfair to foist this huge responsibility on family.

This is the time to hire out and get everything delivered: groceries, meals, prescriptions, medical equipment and supplies.

Take a hard look at patient’s medical care team to include dentist and optometrist and any specialists. Combine and eliminate and streamline. My parent was dragging one to the dentist until the dentist stepped in to say stop - too stressful for all and unnecessary.

Caregiver stress is real and can truly be a killer.

[Anonymous]

Anonymous wrote:PP re: can’t be left alone.

My mother left my newly diagnosed w/ dementia father alone for two hours. She had been advised never to leave him alone but was in denial/wanted to be with friends.

While she was away, he got out a step ladder they kept in their carpeted closet and decided to climb it to change a light bulb in their upstairs bathroom. My mom arrived home and my dad was splayed out on the floor writhing in pain.

Rescue was called and he had to be lowered down their winding old staircase by some system of pulleys. Took over 30 minutes to gingerly get him out to the ambulance.

He shattered his hip. Wasn’t expected to survive to have surgery. He did and lingered for three grueling years in a near vegetative state in skilled nursing.

All because my narcissistic mom was in complete denial and refused to let my dad’s new diagnosis change her lifestyle in any way shape or form.

Wow you are horrible. Maybe your mom needed a BREAK!! You could have gone to sit with your dad or helped hire help so your mom could go out for two hours. Caring for an elder is very hard, emotional work. I hope to dining my sleep before I need help because after caring for a parent, I will never burden my children like this. It’s a horrible life.

[Anonymous]

Anonymous wrote:No DIY eldercare. Call in the professionals and use every resource available like adult daycare, respite care, visiting nurses. Limit having to transport the dementia patient all by yourself because this gets incredibly more precarious and time consuming and stressful for all involved.

Do not try to cobble together family members who can “help” provide supervision and care. This isn’t anything like childcare or babysitting and is unfair to foist this huge responsibility on family.

This is the time to hire out and get everything delivered: groceries, meals, prescriptions, medical equipment and supplies.

Take a hard look at patient’s medical care team to include dentist and optometrist and any specialists. Combine and eliminate and streamline. My parent was dragging one to the dentist until the dentist stepped in to say stop - too stressful for all and unnecessary.

Caregiver stress is real and can truly be a killer.

Thank you, I also posted about how this same family member is having a quarterly dermatologist visits that are always resulting in procedures and the consensus there was to stop as well.

[Anonymous]

Anonymous wrote:

Anonymous wrote:PP re: can’t be left alone.

My mother left my newly diagnosed w/ dementia father alone for two hours. She had been advised never to leave him alone but was in denial/wanted to be with friends.

While she was away, he got out a step ladder they kept in their carpeted closet and decided to climb it to change a light bulb in their upstairs bathroom. My mom arrived home and my dad was splayed out on the floor writhing in pain.

Rescue was called and he had to be lowered down their winding old staircase by some system of pulleys. Took over 30 minutes to gingerly get him out to the ambulance.

He shattered his hip. Wasn’t expected to survive to have surgery. He did and lingered for three grueling years in a near vegetative state in skilled nursing.

All because my narcissistic mom was in complete denial and refused to let my dad’s new diagnosis change her lifestyle in any way shape or form.

Wow you are horrible. Maybe your mom needed a BREAK!! You could have gone to sit with your dad or helped hire help so your mom could go out for two hours. Caring for an elder is very hard, emotional work. I hope to dining my sleep before I need help because after caring for a parent, I will never burden my children like this. It’s a horrible life.

I wouldn’t call going to a church function a break. And, not everyone has a nice relationship with their parents. Some parents are abusive and neglectful to their children. Mine were.

[Anonymous]

Anonymous wrote:

Anonymous wrote:When you go to the doctor, don’t let the spouse of the patient downplay the symptoms or present a rosier picture than reality. That will delay getting the kind of help needed. Also, be prepared for the patient to remember specific long-term memory things like SSN or birthdate, but not know what year it is.

My husband is going to the appointment with his parents, to make sure that doesn’t happen and that we get information from the doctor.

Your husband needs to figure out a way to speak to the doctor privately. I’d go all the time with my mom and when I’d try to explain how things really were, she’d deny and act like she was better than she was. Having private time with the doctor let me say how things really were without offending her.

[Anonymous]

Anonymous wrote:A family member is exhibiting some signs of cognitive decline (awaking in the middle of the night and escaping, unable to follow tv or use electronics etc) We have a neurologist appointment scheduled, and there is a mostly capable spouse and a caregiver who comes a few times a week to assist. What should we have ready for the appointment and potential next steps?

You should see an MD about getting a prescription for Namenda. It absolutely slows the onset of dementia. It won't stop it, but it slows it down.

[Anonymous]

Anonymous wrote:Get POA now

Also start on aricept

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Do not leave this person alone. Must be monitored 24/7. Sorry.

Absolutely no driving. Hide the keys/their license. Remove car battery if you must.

No showering w/o supervision and I suggest a shower chair. No up/down stairs without assistance. No in/out bed without assistance.

Likely a written memory type standardized test will be administered in office.

Make certain DH or other responsible party takes notes during appointment or record on your phone.

Good advice, to which I’d add:
unplug or disable stove.
Install scald guard on bath and faucets.
Remove or cover mirrors.

Can you explain this? I’m dealing with a recently diagnosed parent and the other parent is both in denial and covering up for spouse and has been for quite some time. The other things mentioned make sense, but why cover up mirrors? Do they get startled or scared of their own reflections?

Yes. First, my mother called the police to report an intruder. Then I went to see her and realized who the intruder was - herself. Without the lights on, it looked like a dark figure. With the lights on, it was someone she couldn’t recognize. She actually yelled at the mirror and said the intruder was yelling at her, when it was her own voice she heard. All the mirrors became a problem eventually, she simply did not recognize her aged self or was haunted by the reflections of light or images in general. She’d try to reach through them to grab objects that were in front of her. She’d take them off the wall and move them, which is terribly dangerous.
Sigh.

[Anonymous]

Anonymous wrote:

Anonymous wrote:PP re: can’t be left alone.

My mother left my newly diagnosed w/ dementia father alone for two hours. She had been advised never to leave him alone but was in denial/wanted to be with friends.

While she was away, he got out a step ladder they kept in their carpeted closet and decided to climb it to change a light bulb in their upstairs bathroom. My mom arrived home and my dad was splayed out on the floor writhing in pain.

Rescue was called and he had to be lowered down their winding old staircase by some system of pulleys. Took over 30 minutes to gingerly get him out to the ambulance.

He shattered his hip. Wasn’t expected to survive to have surgery. He did and lingered for three grueling years in a near vegetative state in skilled nursing.

All because my narcissistic mom was in complete denial and refused to let my dad’s new diagnosis change her lifestyle in any way shape or form.

Wow you are horrible. Maybe your mom needed a BREAK!! You could have gone to sit with your dad or helped hire help so your mom could go out for two hours. Caring for an elder is very hard, emotional work. I hope to dining my sleep before I need help because after caring for a parent, I will never burden my children like this. It’s a horrible life.

Oh stop. Get off your high horse. It was up to her mom to call for assistance, and she didn't. Nowhere did PP say "she called me, but I said no, and she left anyway." Clearly this was a lifelong trend and not a one off mistake.

[Anonymous]

Maybe too late for this but keep the newly diagnosed person as engaged as possible in their quieter hobbies. My late mother never could sit still and was very active (always had to be doing something) and we struggled to keep her “busy.”

For my mother, she enjoyed folding clothes so we’d sit and chat while she matched socks and folded kitchen towels (her own or mine).

She enjoyed writing letters but couldn’t really hold a pen but she could stuff and seal envelopes.

She also enjoyed “fashion shows” where I’d bring over some recent purchases and she’d suggest accessories for me. Sometimes we’d look through her box of costume jewelry and select necklaces to go with her collection of cardigans and tops.

[Anonymous]

Anonymous wrote:Maybe too late for this but keep the newly diagnosed person as engaged as possible in their quieter hobbies. My late mother never could sit still and was very active (always had to be doing something) and we struggled to keep her “busy.”

For my mother, she enjoyed folding clothes so we’d sit and chat while she matched socks and folded kitchen towels (her own or mine).

She enjoyed writing letters but couldn’t really hold a pen but she could stuff and seal envelopes.

She also enjoyed “fashion shows” where I’d bring over some recent purchases and she’d suggest accessories for me. Sometimes we’d look through her box of costume jewelry and select necklaces to go with her collection of cardigans and tops.

I like that idea!