Things I've learned living with my Alzheimer's Diseased Loved One

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Some time ago when I was active on the Alzheimer’s message boards, I had started a thread intended to humorously “vent” some of the frustrations that caregivers encounter. There were over 300 replies on that thread. I condensed it as much as I could and share it below in hopes that it will perhaps be of use and encouragement to any who are on the journey of being a caregiver to an ADLO

THINGS I’VE LEARNED LIVING WITH MY ADLO

Basic Realities

The ADLO makes the rules
In event of conflict see rule number one.
Just because they have AD does NOT mean they are dumb!
Just because you think they are in bed, they may just be waiting for YOU to go to bed
You can usually count on them to remember anything that you would like them to forget.
The ADLO’s reality IS the true reality. We’re the ones having the problem.
AD is contagious – You get it from your ADLO
ADLO’s have two speeds. When you are helping or need to be somewhere they move in slow speed. If you turn your back on them they move at warp speed away from you.
UTI’S happen
ADLO’s know all the best hiding places
Each day they get younger, while we caregivers grow older
A good washing machine/dryer is worth more than the Hope Diamond!
Therapeutic lying will become second nature to you…and you will be proud when you come up with a good one.
LAUGHTER really is the best medicine.
Doctors don’t always know what is best
A smile can provide more security than spoken words.
Memories aren’t important. it’s the time you spend making them…and the one’s you make them with…that matter
Never try to REASONwith an ADLO, their REASONERis broken
They will trip and fall down, no matter how careful everyone is
Unconditional Love is just that unconditional…

Things they will do and say
Laundry folded and stacked neatly does NOT mean it was actually washed.
Just because they don’t know your name, doesn’t mean they won’t remember where the chocolate is
AD means you no longer need to mind your manners. You are able to now pick and scratch in public.
We’re wrong! We never bothered to tell them that we…!
Paper napkins are a universal tool. They may be used to wipe your nose, clean the table, wipe the floor and the mouth and hands. (in that order)
What do you mean I’m your mother…since when?
He’s your son? How long has he been your son? Does he have a father?
“why am I taking this pill?” It’s for your memory…“Oh, yeah I forgot!”
The Thermometer must be checked every 2.5 minutes so that the reading can be announced to all within earshot.
Thermometer readings will always have changed from the last reading. Never mind that the last reading was 2.5 minutes ago
Wandering from room to room declaring that the item is missing constitutes “searching high and low”.
If it’s in a tube it’s for your hair and skin.
If it’s in a spray bottle, it’s for your armpits
No matter what is missing the damn cat stole it!

Kitchen – Eating etc
The place They ALWAYS keep the pots is not necessarily the same place they just got them out of.
A maximum of 2 dirty dishes must be washed immediately in a full sink of soapy water
Don’t jump to conclusions…just because they didn’t put milk in their oatmeal, doesn’t mean they forgot…maybe they like it that way…
Any food can be finger food (soup, grits, cream of wheat, oatmeal, choc. pudding)
Ice cream RULES!!!
Chocolate Pudding is a perfectly acceptable dipping sauce for Fish Sticks!!
Just because I blow my nose with a napkin dosn’t mean I cant clean the table off with the same napkin

Bathroom
Water is the devil
Just because they are having a good day doesn’t mean they won’t use the toothpaste as a moisturizer later
Toothpaste can be used as a substitute behind the ears for perfume. Toothpaste can also be used as facial makeup and skin lotion for dry legs.
“Depends” and “Flush” should never be used in the same sentence
Never, never, never go to the bathroom at night barefooted

Be prepared to change the bed sheets everyday!
It’s poop, not toxic waste
There is nothing wrong with polishing your fingernails while you’re on the toilet having a “BM”, in the middle of the night, with the dog on your lap.
ALWAYS have plunger within easy grasp!!!
If toilet paper is to work, it must be used in bunches larger than the hole at the bottom of the toilet
Shower curtains are used to hide the many visitors who are trying to peep on you. Therefore, the shower curtain must be pulled back
Never underestimate their abilities to fool you. Just because the water is running in the shower does not mean they are actually IN the shower.
A wash cloth works better than toilet tissue after u use the potty…GROSS

Dress
Putting on a shirt backwards and wearing it is a sense of accomplishment and is a good thing.
Just because there are 6 inches of snow doesn’t mean you have to wear your boots!
The “layered look” is IN!!
The colder the weather, the lighter the clothing - and vice versa
Sweaters are much more attractive when worn underneath turtlenecks.
Native Americans don’t have right and left footwear; ADLOs don’t, either.
Geriatric Troll Doll hair is the latest trend.
When undressing they will get halfway there, forget and start dressing again
 
😦

Napkins were a form of valuable currency for my grandfather. He’d keep stacks and stacks of them in his drawer and try to give them to my mom as a gift, “I’ve been saving these for you.”

Another time he asked my cousin who her pretty friend was, what a nice young lady…it was me. 😦
 
😦

Napkins were a form of valuable currency for my grandfather. He’d keep stacks and stacks of them in his drawer and try to give them to my mom as a gift, “I’ve been saving these for you.”
That’s sad…but precious too.
The thing that we have to learn is to accept them gracefully.
Another time he asked my cousin who her pretty friend was, what a nice young lady…it was me. 😦
Yup - one of the saddest moments is the first time that your loved one says “who are you?”

Of course it’s kind of nice when they are so complimentary as your grandfather was.

Peace
James
 
What I learned from my loved ones with dementia:
–If they enjoy telling the same story ten times in a row, enjoy that with them. By the tenth time, hey, you’ll know exactly the right response. It does not have to be sad that you can make two old ladies split a gut ten times in a row.
–Distraction is your friend
–You know those weird dreams where stupid things that don’t go together make perfect sense? Her mind can do that at any time, and it seems just as real to her as your dreams seem to you at the time. Pointing out the contradictions just makes it into a bad dream.
–The “Every Day is Monday” phase only lasts as long as she can remember what happened an hour ago. When you can’t remember what happened five minutes ago, but everyone is acting as if it has been a good day, well, you may just conclude that you’ve been having a good day, and try to keep on having one.
–You can blame every “stupid” rule on her doctor; the doctor will not mind.
–“Oh, I’m sorry. Someone should have told you that. No wonder you were confused.” Go ahead, you can say it. It won’t hurt anything.
–Never ever lie when the truth will suffice, but use the kindest truth you can come up with. If she wants to know why it won’t work to call her dead husband on the phone, she won’t accept that he’s dead, but she can serenely accept that you have noticed that when he left he didn’t take a cell phone with him.
–When she wants to cook, you can tell her that today she gets to take a break and you’re going to cook for a change, as a special treat for her. That, she can accept, because it doesn’t imply that she’s incapable. It also allows you to be very good-natured about refusing her, as if you’re talking her into letting you do her a favor…which you actually are.
–You can blame temporary unforeseen circumstances as many times as you like.
–The people on soap operas talk as if some of us just tuned in after missing a month of the show, and so can we. Do it; it is comforting for anyone who feels that they just dropped into a conversation that’s been going on for a month without them.
–Imagination is your friend…if she doesn’t know “key”, she might know “that thing that locks and unlocks the front door”.
–If you can figure out what really worries her in this moment, and take care of that, you are halfway there. If she is wants to know where her dead husband is, all she wants to know is that he’s doing well somewhere and not held up for some reason that ought to worry her.
–It doesn’t hurt for them to be wrong and think they’re right, and it won’t hurt you, either.
–No, they did not “always think” those terrible things about you. What they say now is deluded and what they said then is what they really felt at the time.
–This is someone who can have you mixed up with umpteen someone elses for a year and a half, and then one day know exactly who you are, and then ten minutes later have no idea…but in some moments, sometimes, there is that flash. You just never know. The main thing is to be whoever they’d be happy to be with them. The actors do it at Disneyland, which is why it is the Happiest Place on Earth.
–You never know, you have to be ready to fall down Alice’s Rabbit Hole in any minute and land on your feet. That is really tiring, like flying a plane in the dark on instruments, so don’t try to live there without respite. It can kill you a little bit at a time…don’t let that happen. Taking care of everybody has to include taking care of you.
 
That’s sad…but precious too.
The thing that we have to learn is to accept them gracefully.

Yup - one of the saddest moments is the first time that your loved one says “who are you?”

Of course it’s kind of nice when they are so complimentary as your grandfather was.

Peace
James
I remember my mom did not know who I was for at least a year and a half. Then one day I walked into her hospital room, she opened her eyes, and said, “Why EasterJoy! How good to see you! What are you doing here!” So you never know. And hey, if she mixed me up with someone she liked, that wasn’t such a bad thing. (Maybe I felt this way because she called me and my sister by each other’s names half the time when we were growing up and she still had all her buttons…to the point that we were just happy to not be called by one of the boy’s names. :D)
 
My Grandfather (may the Lord remember him in his kingdom) had a stroke that caused problems similar to those with Alzheimer’s. However, he always made jokes. One day he answered a ringing phone and said, “Hello. Who am I?” 😛

He’d get his children’s names mixed up and forgot the names of his grandchildren altogether (sometime he thought that I was my dad). But, he always had time to joke about his condition. :cool:
 
EJ,
That is a great list of lessons…Your comment about cooking reminded me of another thread from the Alzheimer’s board for easy recipes - especially those that might have simple tasks that an ADLO could help with. I remember there were a lot of ideas, but I can’t really remember any…🤷

The most important thing is that we do all that we are able to do to make our loved one’s last years as beautiful as we can - while maintaining our own sanity. That is why I always encourage humor.
I was fortunate in that my dear lady was a psych nurse for many years so knew what was coming when we got the diagnosis. We were determined to be as joyful as we could be. We even “named” the disease “Al” for “Al Zeimer” and when things would happen like not being able to find something…“Al” hid it or took it or whatever.

I still try to get her to smile because it lightens my heart - and the fact that she has such a great smile. I call her my “Cheshire Cat” because…like the Cat in Alice…everything that she was has now disappeared except the smile.

Anyway - thanks for the additions to the list. Hope others are helped by them as well.

Peace
James
 
😦

Napkins were a form of valuable currency for my grandfather. He’d keep stacks and stacks of them in his drawer and try to give them to my mom as a gift, “I’ve been saving these for you.”

Another time he asked my cousin who her pretty friend was, what a nice young lady…it was me. 😦
My mom collects napkins and kleenex and pieces of toilet paper too! Piles are found squirreled away everywhere. She also likes to offer me the rest of whatever she is eating…
And one of my Mom’s typical greetings when she walks in the room is, “Have you seen Charlotte lately?”

The OP’s post and EasterJoys post had so much good in it to respond to I will have to get back to it when its not bedtime…
 
My mom collects napkins and kleenex and pieces of toilet paper too! Piles are found squirreled away everywhere. She also likes to offer me the rest of whatever she is eating…
And one of my Mom’s typical greetings when she walks in the room is, “Have you seen Charlotte lately?”
Boy the kleenex thing must be pretty common. My wife use to do that. The would pull them out of the box, one at a time and neatly fold them in half lengthwise making a nice little pile. These would periodically disappear into a drawer someplace and the process begun again. Funny thing was that if she actually NEEDED one, she’d look for the box.
The OP’s post and EasterJoys post had so much good in it to respond to I will have to get back to it when its not bedtime…
Look forward to it.

Peace
James
 
Some time ago when I was active on the Alzheimer’s message boards, I had started a thread intended to humorously “vent” some of the frustrations that caregivers encounter. There were over 300 replies on that thread. I condensed it as much as I could and share it below in hopes that it will perhaps be of use and encouragement to any who are on the journey of being a caregiver to an ADLO

THINGS I’VE LEARNED LIVING WITH MY ADLO

(…)
These really paint a picture. My grandma was afraid of alzheimer’s or any kind of dementia so she would make lists of things to prove she could remember them, e.g. the Mysteries of the Rosary, the names of her grandchilfen, etc. We found them here and there, around her apartment after she died.
 
These really paint a picture. My grandma was afraid of alzheimer’s or any kind of dementia so she would make lists of things to prove she could remember them, e.g. the Mysteries of the Rosary, the names of her grandchilfen, etc. We found them here and there, around her apartment after she died.
My mother was also very afraid of this.

When she was in the hospital, near the end of her time, she would introduce me to everyone that walked into her room. It seemed like she wanted to prove she remembered me.
 
Lists - That is interesting. Makes sense though.

Dementia is a terribly frightening prospect. I’ve been through it twice now…and I know that it is in my “Blood-line”.

Peace
James
 
Oh, the lists! My mother in law makes them and hangs them on the front door for all the neighbors to see. "Where’s my money? Bank?? need whipped cream. MOVE!!
 
EJ,
That is a great list of lessons…Your comment about cooking reminded me of another thread from the Alzheimer’s board for easy recipes - especially those that might have simple tasks that an ADLO could help with. I remember there were a lot of ideas, but I can’t really remember any…🤷
I remember a geriatric nurse saying that some people find a task to be very calming. One daughter of a dementia patient came up with this clever solution: She had two baskets of laundry. One was full of socks, all the same. The other was full of kitchen towels, all the same. When her mom needed something to do, she’d bring out a basket. Then, when Mom was done, her daughter would whisk the basket away, take it back to the laundry room, mess it all up again, and have her “task” ready for the next time it was needed.

Another woman’s father would hide his wallet so it wouldn’t be stolen, then not be able to find it–and of course think it was stolen! The daughter had several spare wallets for him, which allowed her to “find” his wallet when he wanted it and then have time to hunt up the others before all had been squirrelled away.

Another woman thought every person going by her house was watching her. Her family put an arbor up and had pretty flowers outside the window, screening her from the street, but still letting the light in.

Another family had to take Mom’s car away. They did not tell her that they had taken it away. They told her it was “in the shop”. Well, it was in a shop…locked in there so Mom wouldn’t drive herself anywhere. Another family’s mother wouldn’t cope with an empty garage, so they had a kill switch installed with an note on the engine for AAA to find, in case their mother called for a mechanic because her car wouldn’t start. Had their mother insisted on driving when they were headed to the doctor (I don’t think this ever happened), the car wouldn’t have started, and they would have “had to drive” her. As it was, they would say, “Well, I’m going to the doctor, too, so it would be silly to take two cars. I think it is my turn, so let me drive.” She figured, hey, as many places as Mom has driven me, I could drive a hundred times in a row, and I would still owe her a ride!

Another thing I have heard was learned from assisted living facilities, which have special super-short super-easy menus for dementia patients. This family would be to go to a restaurant, let the staff know ahead of time that they had a dementia patient, and instead of giving anyone a menu, they’d be able to ask, “Would you like the _____ or the _____, Mom? I’m going to have the ______”. Mom would either take one of the two choices or else think of something else to ask for, but she wouldn’t be overwhelmed by having to choose from a menu. This also allowed them to order quickly. If Mom said, “Why aren’t we getting menus?” the family would just say, “Oh, I have it in special with the chef, so we don’t need menus. We’re ordering from his specials.” Usually Mom will go along with this, because, well, she doesn’t have to let on that everything in the whole place was confusing.

That’s the thing…people with dementia feel more relaxed if they don’t have to admit openly that they are confused. They want cover. If you can give them cover without letting on that you’re doing that on purpose, it helps them relax a great deal. You won’t hurt their mental capacity; you’ll just make them more comfortable.
 
EJ,
Yes - “tasks” are things that are always helpful. One thing good caregivers learn is to recognize, latch on to,and utilize things that catch the attention of the ADLO.

A couple of years ago I picked up a really soft “teddy bear” around Valentines day. He is about 12" tall and ha a knit shirt on. I noticed DW trying to take his shirt off of him but it was attached and she was getting frustrated. A couple of quick snips and the shirt would come off. So she would pull it off…and try to put it back on (usually unsuccessfully).

So I headed to the “Dollar Store” and started to pick up more things for him “Theodore Edward” (Ted E for short) to wear. O got goodie bands with big bow on them for bow ties. Infant socks for his feet. a cloth “baseball and bat” with elastic to go on his arms. Pretty much anything that I could “dress him up” in and she could then pull and and ultimately undress him. The first time I took DW to the Hospice IPU for respite care, the bear went with us. I told the staff in no uncertain terms that her job was to undress him and their job was to dress him. 😃

Now he’s back to just wearing his shirt and she can’t pull it off anymore - but Ted is still her buddy and sits with her every day.

Another thing that is kind of nice and fun is “balloon volleyball”. Pretty self explanatory. We didn’t bother with a net but would just sit and try to bat it back and forth.

So many ideas…The key is that they should be content.

Peace
James
 
EJ,
Yes - “tasks” are things that are always helpful. One thing good caregivers learn is to recognize, latch on to,and utilize things that catch the attention of the ADLO.

A couple of years ago I picked up a really soft “teddy bear” around Valentines day. He is about 12" tall and ha a knit shirt on. I noticed DW trying to take his shirt off of him but it was attached and she was getting frustrated. A couple of quick snips and the shirt would come off. So she would pull it off…and try to put it back on (usually unsuccessfully).

So I headed to the “Dollar Store” and started to pick up more things for him “Theodore Edward” (Ted E for short) to wear. O got goodie bands with big bow on them for bow ties. Infant socks for his feet. a cloth “baseball and bat” with elastic to go on his arms. Pretty much anything that I could “dress him up” in and she could then pull and and ultimately undress him. The first time I took DW to the Hospice IPU for respite care, the bear went with us. I told the staff in no uncertain terms that her job was to undress him and their job was to dress him. 😃

Now he’s back to just wearing his shirt and she can’t pull it off anymore - but Ted is still her buddy and sits with her every day.

Another thing that is kind of nice and fun is “balloon volleyball”. Pretty self explanatory. We didn’t bother with a net but would just sit and try to bat it back and forth.

So many ideas…The key is that they should be content.

Peace
James
I love the bear story! A lot of flexibility, a good imagination, and a sense of humor are essential! 👍
 
I enjoyed these posts because this is a big part of my life. I work with behaviorally challenged children by day and then this by night. A teacher friend today said she thought of me when some tv person solicited suggestions for someone for a free spa weekend (on account of the above day/night occupations). But I feel there are lots of others who deserve that over me, because of a plethora of very much worse situations. Some of which you can read about on this forum! God truly gives me so much grace to deal with this. I really am usually not stressed (and when I am I know Whom to go to for help).

It used to be much more stressful but now that Mom has gotten worse its easier. Plus I am not doing some of those things that everyone knows are all-wrong for Alzheimers, like use reason. Acceptance is the best!

Below are some favorites:
The ADLO makes the rules
In event of conflict see rule number one.

The ADLO’s reality IS the true reality. We’re the ones having the problem.

We’re wrong! We never bothered to tell them that we…!
Yes and Mom was always right even when she was wrong, only its for even more confusing reasons she is “right” now…
What do you mean I’m your mother…since when?
He’s your son? How long has he been your son? Does he have a father?
Yes, this and many times daily here: “Oh! You live here? How long have you lived here?” And also, “Who else lives here?” and “Where did everybody go?” (I haven’t figured out who these everybodies are yet.)
have two speeds. When you are helping or need to be somewhere they move in slow speed. If you turn your back on them they move at warp speed away from you.
Yes, Mom’s escapes made life very stressful for awhile. Now we have chain locks at the tops of the doors and we are always locked in. So I can be at peace at home. We went on a lot of searches before those locks.

Most of her escapes were Mom “going home”. Her main theme she is stuck on is if she could just get home, everything would not be so strange and confusing.
Therapeutic lying will become second nature to you…and you will be proud when you come up with a good one.
Yes, its great to come up with a good one, because then you can use it again and again.
Doctors don’t always know what is best
👍
A smile can provide more security than spoken words.
This is everything. Its the best I can do for my Mom. Answer peaceful and not stressed and friendly, like all is ordinary, and she is my welcome guest. And I am glad to see her when I come in the door. [which is only by the grace of God. Mom and I never got along that great. Personality clash. I think she is a “Dual” with my eldest brother - they still have that special something. But I have needed God’s grace and a determination to do the right thing and I still continually ask for grace to do the right thing.]
Never try to REASONwith an ADLO, their REASONERis broken
I had no peace till I learned this.
Laundry folded and stacked neatly does NOT mean it was actually washed.
Oh yeah.
Wandering from room to room declaring that the item is missing constitutes “searching high and low”.
LOL, seen this one!
If it’s in a tube it’s for your hair and skin.
If it’s in a spray bottle, it’s for your armpits
No matter what is missing the damn cat stole it!
:yup:
The place They ALWAYS keep the pots is not necessarily the same place they just got them out of.
Yes, and Mom will say, “I never lost anything before.” and “I always put things back where they go.”
Ice cream RULES!!!
Yes, her happy place.
Chocolate Pudding is a perfectly acceptable dipping sauce for Fish Sticks!!
The food thing can be scarey. Every put a lock on the fridge? I have one on the freezer. I want her to be able to reach in the fridge to get food out, but I think I need to put a lock on the deli drawer for off-limits stuff.
Never underestimate their abilities to fool you. Just because the water is running in the shower does not mean they are actually IN the shower.
:yup:
Putting on a shirt backwards and wearing it is a sense of accomplishment and is a good thing.
Just because there are 6 inches of snow doesn’t mean you have to wear your boots!
The “layered look” is IN!!
The colder the weather, the lighter the clothing - and vice versa
Sweaters are much more attractive when worn underneath turtlenecks.
And you know another useful tip is that a bra works for underpants and underpants works for a bra. On top of clothes or underneath them! Whatever!
When undressing they will get halfway there, forget and start dressing again
Yes

see next post for my favorites of EasterJoy’s
 
What I learned from my loved ones with dementia:
–If they enjoy telling the same story ten times in a row, enjoy that with them. By the tenth time, hey, you’ll know exactly the right response.
Yes, it helps when you hit on it.
–Distraction is your friend
That’s the truth. And an ongoing art to learn.
–You know those weird dreams where stupid things that don’t go together make perfect sense? Her mind can do that at any time, and it seems just as real to her as your dreams seem to you at the time. Pointing out the contradictions just makes it into a bad dream.
Good explanation.
–“Oh, I’m sorry. Someone should have told you that. No wonder you were confused.”
I say this or something like it a lot.
–Never ever lie when the truth will suffice, but use the kindest truth you can come up with.
I went from transparency and too much explaining to this, and now a lie will do if its easier. It was a HUGE step for me to lie and a fear it might cause me to lie in other areas of my life. But its just for Mom and for a purpose. I know in Heaven when we look back she will not be wishing I would have found a way to twist the lie into a half-sort-of truth. The goal is to make her feel better, and I have to come up with things on the fly and I can’t stress about it. My being not stressed-out helps her feel better.

Like her constant “I’m going home now”: “Oh, we don’t leave til tomorrow morning!” has been a useful response. All the others invite argument, it seems. Trying to explain, “You live here” invites a sarcastic laugh and a real snipey, "Yeah, su-re." and then a repetition that she wants to leave now.

And those simple truthful statements came after many extended, lengthy guided “tours” of the house, pointing out all her things, even pulling open her drawers to show her her things, drawing the expected highly-offended response that I am going in her bureau, and pointing out, “Yes, its YOUR bureau! In YOUR room in YOUR house!” and I still would get, “I’m going to my OWN home.” Then I am reduced to, “Well, call a moving van! You have to take all this stuff with you!” And also I have often explained, “All those other houses have other people living there with *their *stuff and their families. You can’t go there.” She’ll laugh sarcastically and say, “Yeah, sure.” and right back into, “I’m going home now!” and in a most pitiful, pleading, polite little voice that only a real meany could say no to: “Could you puh-lease help me open this door?”

Yeah. So all that brought me to the much easier, happier: "Oh! That’s tomorrow!"
–When she wants to cook, you can tell her that today she gets to take a break and you’re going to cook for a change, as a special treat for her. That, she can accept, because it doesn’t imply that she’s incapable. It also allows you to be very good-natured about refusing her, as if you’re talking her into letting you do her a favor…which you actually are.
It used to bother me whenever I put a meal in front of her she’d say, “Oh! Its the first time anybody’s cooked for me in a long time!” Now that I accept that there are no thanks coming, I just say, “Yes! Its a nice treat once in awhile, isn’t it?”
–Imagination is your friend…if she doesn’t know “key”, she might know “that thing that locks and unlocks the front door”.
Good idea. Its always her describing things strangely, but I guess I do automatically give other names to things when she is not following.
–No, they did not “always think” those terrible things about you. What they say now is deluded and what they said then is what they really felt at the time.
One Saturday it was just Mom and me at home. She was being extremely hostile all morning no matter how nice I was. Nothing could please her! Finally after a long morning of chilly snipes and angry negativity, she went to her room for a nap. When she came back an hour later she said, “Oh! I am so glad you’re here! That *awful *woman was here this morning!” :rotfl:
 
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