Prepping with family member having dementia

Steve Martin - November 15, 2022

Well wanna talk about emotional burdens? My wife of 45 years has early onset dementia. Not too bad just yet but we’re at that point where I have to supervise anything serious she does such as cooking. I have to check the stove to make sure she didn’t leave the burners on, at night I have to be the last one in bed so I can check the doors to make sure she hasn’t left the doors standing wide open all night etc. So how does she fit into my prepping plans? I honestly don’t know anymore. The last year has been an emotional roller coaster but at least its slow progressing dementia. I know of patients here locally that have gone from “nothing wrong” to wheel chair use and full time care in just 2 years. Something to think and worry about: do you have a family member who’s already suffering some mental/emotional issues due to the developing world/political situation? If the SHTF as they say….they may get worse. Have you figured that into your plans and preparations? I have no magic advice in that area. Wish I did. I have one “ace in the hole”….the family doctor is also a member of my prep team and lives close by.

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@Steve Martin, I feel for you.

My MIL has severe, advanced dementia. Onset was in her mid-late 70’s. She’s almost 90 now.

My MIL/FIL live in NYC but we live in the Midwest. My wife is an only child. My FIL kept her off the phone when my wife called for 7-8(?) years. She would ask about her mother and he would say ‘she’s fine but busy and can’t come to the phone now’. We heard her voice a few times and realized she had dementia.

The apartment building they live in called my wife 2 years ago to report her mother was wandering around the neighborhood. They asked her were her husband was and she said ‘at the movies with his friends’. My wife called the precinct for a welfare check and they found him dead in the apartment. My wife flew to NYC on the next flight. The apartment building could not restrain her but the precinct an put alert/watch on her for all officers until my wife arrived.

My wife found her mother unable to speak consistently or reliably and it was often not reality. She could not bathe, feed herself, use a phone or watch/understand TV. She would turn the stove on and walk away, she threw most of her left-foot shoes away and she would leave the building when my wife was in the shower. She did not know who her daughter was. What made this situation much more difficult was the fact that aside from her dementia, my MIL was as strong as a horse. No health problems at all.

Eventually, my wife and police got her to the hospital were they said she cannot live outside a psychiatric home ever again. She required 24 active supervision.

We visited her this past weekend and she’s healthy but did not know who we were and could not speak coherently. She is being well cared for.

My FIL took care of her for years – but he NEVER left her side. She went with him everywhere he had to go. He never told us about the situation or asked for help. I think he was afraid she would have to go to a psychiatric old age home and he couldn’t live without her – so he coped with the situation. He loved her.

You need help now. Confide in family so they can help you. You will need a break from time to time.

You must also make financial arrangements. My FIL died and all their money was in joint accounts. My wife had to be named Guardian before she could pay any of their bills – and that took 15 months!  Our lawyer said this could have been avoided if the accounts were re-titled so that my wife was joint too. My FIL would not even have had to tell my wife. He could have left a letter saying ‘in the event I die, call Lawyer Joe at 1234567890’ and he could advise she’s joint and could use the money for her mother’s care while the guardianship went through the court system.

Most dementia patients are on anti-anxiety meds. Talk to her doctor about a supply for +30 days. They also don’t sleep through the night. A double deadbolt on the doors and a good dog are something to think about. Advise your local police. I could write a book about how kind, compassionate and professionally equipped the NYPD is to care for and protect these people.

 

I do not have words to say how sorry I am for you Steve Martin and Shaun. This is a very sad disease for sure and I have a soft spot for those who I hear are going through it. Steve, for you to experience this so young in your marriage, it must have been an extremely hard this past year. 

My only advice is to take care of yourself, and the next time you meet with your doctor, ask if there would be any benefit to having your wife go on a ketogenic diet. With the help of a nutritionist, it may help. There was a study done in 2020 in the Journal of geriatric psychiatry and neurology titled Ketogenic Diet for the Treatment and Prevention of Dementia: A Review. The summary is that this way of eating has the potential to lower systematic inflammation in the body and allow malfunctioning body functions to potentially heal. I’m not saying it’s the cure to all dementia, but possibly could help since you caught it early and may prolong the decline.

As to how to prepare for such a life, Shaun had good advice of getting your finances and all that legal stuff in order now and tie in a close family member to help you. Plan to adjust your life if things get worse and do not feel bad if you have to get a part time nurse to help out at the house or potentially taking her to a full time care facility. My family had all the good intentions that they could muster to help my grandfather with dementia out, but eventually it just was way too much on a huge support network of people to even handle and he went to a care facility. He is doing well there and is living out life the best way he can. 

 

I’m sorry you and your wife have to go through this. My mother had dementia. I can’t imagine going through a disaster while taking care of her. We had to have a new water well drilled while she was still at home and she and I stayed in a hotel. I woke up about 3 one morning and she had disappeared from our room. Thankfully, we found her before she got out of the hotel. That’s when I realized I would not be able to take care of her at home. I don’t have any advice for prepping except the meds are a big deal so try to have a supply built up. Eventually, incontinence will also be an issue, so that’s a prep to stock up as well. 

 

Wow! Thank you for sharing. My mom has dementia. My dad takes care of her. They’ve been married 58 years. They are both 82. My dad is a climate denier with all sorts of other strong opinions/delusions.

I’ve evacuated both of them for fire, which I commented on in another thread. That was an eye opener! Dad also claimed we were just going through a fluke heatwave two years ago and chided me for buying an air conditioner. Two days later, mom was in tears because the heat was insufferable. I called my sister. She called them and offered to buy a central a/c. This got him to buy a portable although it’s too small for their space. It’s certainly better than nothing, but I still then bought a generator, not for winter power outages but for summer outages so I can keep the a/c on if/when it’s 110 degrees; not for me but for mom if I need to get her to my place. To be clear, dad takes very good care of mom. They have always been inseparable and are deeply in love.

So to answer your questions- YES AND YES. I always have all of my family in mind as I do what I do. They may scoff, or I scare them sometimes, but they know very well I’m the one one wants around in case of an emergency. I’ve also learned how to maintain healthy mental and emotional boundaries and not take on what I have neither been asked nor need to. However, family is family and we take care of each other, some times just being harder than others.

My existential struggle is, specifically with fire, I think they’re going to get me killed but how do I let them die? It sucks!

My heart is with you. God bless!

 

Having watched dementia progress in my father, I can appreciate the situation you’re in. You make a good point. Most of us are one run of bad luck away from being in pretty dire straights. Who knows what could push someone in your life over the edge. I feel for you having someone you love suffering from dementia. That’s a gut punch under the best of circumstances.

On the positive side, you’re prepping; and it’s great that your family doc is part of your group.

Best of luck to you, sir.

 

Couldn’t agree with you more Hermit. I was in the prime of my life when I was in a motorcycle accident paralyzing me from the waist down. My career that I got my degree in was gone and my entire life changed forever in that moment. There is no way we can know or prep for everything that will come our way, so learning how to be adaptable and change with what comes your way is an important skill. 

 

I’m sorry to hear about your accident, Gideon. I’ve got a ton of admiration for you, having come through that experience to reinvent yourself and thrive.

I think Darwin’s quote was, “It is not the strongest of the species that survives, nor the most intelligent. It is the one most adaptable to change.” 

 

That is a nice quote and very true.

Humans are incredible. They are able to live in the northern most tips of Canada or along the equator. They have left this world and come back. Have lived in machines under the ocean and climbed to the highest peaks. I love reading stories where people have overcame great struggles or trials, they inspire me everyday.