BYC Café

[room onthebroom]

I'm not certain as to whether or not moving the patient into another room in the home that they are familiar with is as traumatizing as moving them to an entirely different home or facility.

In the person's home it would be possible for that person to 'visit' the room. Get used to his or her surroundings. Maybe go there to take a nap, sit, watch TV, etc so that when the big move occurs it isn't as unfamiliar to them.

Also there are 'trick's that you can do to keep them where you want them. People with Alzheimer's disease lose their depth perception. You can lay a black towel or rug in front of their door and they will not step on it because to them, it looks like a 'chasm' they might fall down into.

The main problem with moving them is an uptick in sundowning where they become restless and wander more at night. We noticed them also being more restless when the moon was full.

One of my favorite stories from my experiences working with them was the night one of our Alzheimer patients 'disappeared' right at shift change. We went into panic mode. It was night, it was winter. We locked the place down (almost 200 beds so it was a big facility) and started protocol searching. An hour later, still no sign of the patient. We knew they were inside somewhere as no door alarms had not sounded and they had been sighted shortly before coming up missing.

I was walking through the dining area and on an impulse, checked the doors to the kitchen. One, the door that they kept unlocked so the aids could access a snack refrigerator that they had for the residents, was indeed unlocked. I opened the door and there set the resident in their little geri-walker a contraption made of 1 1/2 inch and 2 inch PVC pipe with a built in seat and wheels that allows an Alzheimer's patient to walk around, sit, socialize with virtually 0 fall risk (although I did once see two 'crash' into one another and tip over)

I went in and called the resident by name and asked them what the devil were they doing sitting in the kitchen? This little old person, very funny, very sweet, completely lost in their own mind because of this horrible disease looked up and me, smiled and said 'Waiting for you to find me!' All I could do was laugh and hug them.

I enjoyed working with Alzheimers patients. The disease is so much harder on the family and loved ones than it is on the person who is suffering from the disease. The family sees what is happening to their loved one, the loss of memory....self....identity while the victim is trapped in their own reality and mind. Family members would ask me how their mom was and I would say, Oh, she's having a great day today in 'Sallyland'. Because that is what they are doing. Living in their own little world that has locked out everyone and everything that they once upon a time loved and remembered.

We worry so much about Covid and other illnesses right now and Alzheimer's disease is the one we should all fear the most.

I love this post! I’m so glad you’re here. I hope you’ll stay.

 

[DobieLover]

@DobieLover & @microchick A question about moving an Alzheimer’s patient into another room. Doesn’t changing the persons environment confuse & scare them? Would it be realistic to keep the one with Alzheimer’s in their old, familiar room & have the one one without move into a different room?

My MIL is going through this. She unfortunately isn’t local, but I’m still trying to learn all I can about the illness & how to manage it. I hate that you guys are going through this, but I appreciate the insight you’re giving us.

I intend to move DH into his own room as soon as I get it finished.
We have a small house and I'll be right around the corner.
If he gets to the point that he is panicking or sundowning or just doesn't know who I am any longer, it's going to be time for him to go to a nursing home. I can only do so much. I can only TAKE so much. I still work and will be working well after he's gone.

 

[microchick]

Dobie I wish I could give you a hug.

You are so in line with what the future holds for you and your dear husband and what reality will be like as he progresses. You have to know your limits and stick to them. I know. I was there.

I had family members come to me, sobbing their hearts out because another family member cursed them out for putting their mom or dad in custodial care because of their Alzheimer's disease. I would hug them and tell them that the next person who said a word to them, ask them if they are willing to give 3 hours a day, five days a week to come into your home and take care of your mom or dad for you so you can have a break, do shopping, go for a walk, just unwind for awhile. I would bet real money that they will shut up really fast, especially when they learn that they will be changing dirty depends, keeping the person from getting into something they shouldn't or dodging blows when you intervene and they take a swing at them.

When I reached the breaking point and knew I had done all I could do for my dad, I put him where I worked so I could keep an eye on the care he got. When the time came I put him on Hospice. One day one of the aids taking care of him came up to me and hugged me. She said they didn't know how I had managed to take care of him and work. Because she had to. Another nurse said.

I took care of both of my parents for almost 20 years. They both had dementia. Dad was happily confused and forgetful, his mind winding down faster than his body. My mom was violent which IMHO is the worst very worst side of dementias and Alzheimer related memory disorders. I do not regret taking care of them. But if I had to do it all over again I would have a lot better support/help network in place and know sooner when to call it quits.

Sure, I can hang around here. It's nice. Keep my coffee cup full in the morning and my tea glass full in the afternoon and I'll be a happy camper!

 

[pennyJo1960]

Something I will have to face one day as my Ma said
My sweetheart is 14 years older than me.
Yes the time with him will be worth the time wihout him

 

[microchick]

As our life expectancy lengthens so does our chances of developing a memory/cognitive impairment disease. There is a number associated with what percentage of people over the age of 80 or 90 develop a form of dementia.

People come to me, honestly scared that because their parents have Alzheimer's disease they are going to get it. I'm getting forgetful they say. The truth is that yes, there may be a genetic connection. But the thing to remember is your car keys. Do you lose your car keys? Sure, everybody does. When you find them do you remember what they are for or do you look at them and are clueless? If you know what they are and what they are for, you are fine. You are forgetful because you are stressed and yeah, not as young as you used to be maybe but if you don't know what they are or what they are for, time to talk to your doc.

@penny1960. None of us knows what tomorrow brings. All we can do is love our loved ones all we can as deep as we can, enjoy each day to it's fullest and pray for a cure.

If you know somebody who is taking care of a family member with AD, offer them a shoulder, a break for an hour or two. Don't stop visiting them because it makes you uncomfortable to be around the victim and you don't have to know what to say. Just give them a hug. Trust me, they will appreciate it.

One of the best books I've read about what it means to be an Alzheimer's caregiver is called

'The 36 Hour Day" It can be found on Amazon.

https://www.amazon.com/36-Hour-Day-sixth-Alzheimer-Dementias/dp/1421422239

 

[DobieLover]

Good morning Cafe. Coffee is ready.
The rain has already started for today.

 

[LaFleche]

Good morning Cafe. Coffee is ready.
The rain has already started for today.

Here I coooome...

Thank you for the coffee @DobieLover , and good afternoon everyone!

Love your insights @microchick .
We had FIL living with us and went through all the stages including wandering at night (leaving the house and getting lost), aggressive bouts, not recognizing his own son and trying to flee from him (persecutional mania), not knowing how to eat, drink etc. etc.
But in between all the stress there were also these very few and precious moments when his confusion and brain fog lifted some and we had laughter and closeness together. I remember him very fondly and still miss him.

 

[cheepteach]

caring for our loved ones is not easy, but an eternal kindness that leaves the caregiver and remaining household members with a feeling of "good Karma". I know my kids will care for me if needed because they have observed/shared with me caring for grandparents

 

[microchick]

Coffee poured into my my "DRIVING MY HUSBAND CRAZY ONE CHICKEN AT A TIME" mug, check. Artificial sweetener in coffee, check. Eyes open...I'm working on that one but Hey! I'm here! Bring on Sunday!

@cheepteach. I'm glad you have a close family network in place for when you start to age and I pray that nobody suffers the trauma of AD or any cognitive disorder.

Believe me and I'm sure @DobieLover and @la Fleche can attest to this. It isn't easy taking care of somebody with AD when they don't recognize you and become combative. I had black eyes, bruises, split lips to name a few injuries and trust me those emotional scars from being hit in the mouth or eye with a fist stays with you long after.

True that it's the disease causing mental breakdown but it still as my minister told me happened and it categorized me as being a victim of domestic violence.

You get tired, you are heartsick and unless you have the muscle power to control the person, you reach the point where it can become dangerous to be in the same room with the loved one. That is when you have to make hard decisions.

As we all age we should make it a point to set down with our family and talk to them. Make out a living will or directive concerning your care as you age and what you want and let your family know where you stand.

Now with that I'm off to refill my coffee mug!

 

[aart]

I cannot imagine living with/caring for someone with dementia.
Makes all my problems 'go away'.