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V. Complaints. Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights. APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.I agree that: A.I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information"). B.APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink. C.APFM may send all communications to me electronically via e-mail or by access to an APFM web site. D.If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records. E.This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year. F.You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
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"What’s the best way for me to understand what it feels like for someone with dementia?"
by appreciating the opposite. thank your lucky stars that your mind is OK. seize your life to the maximum. thrive. be as happy as you can be. that will make your mom happy.
Thank you all for such compassionate sharings. Suggest the movie "The Father." It also displays what it feels like to get worsening dementia. It is critical to set boundaries and redirect your LO sometimes to avoid conflict or your own meltdown. Which in turn makes you feel horrible! It takes faith - for me!
Please don't forget yourself. Yes it is hard not to feel guilty. We tend to beat ourselves over having to let go. I say this. When mom and dad got married I am almost 100% sure that when they decided to have children neither said honey let's have a few kids and we will groom them how to care for us when we are old. Our parents put a lot of their heart and soul into each and everyone of us. The proudest moments for them are what we have become.
Do you ever forget things ? Just think of that everyday like Groundhog Day .. and try to imagine just one day not recognizing a friend or family member and they are trying to get you to do something and you feel like it’s a complete stranger telling you what to do
I read most of the comments and they all seem very inciteful and understanding. My 86 yo wife has Alzheimer's complicated/exacerbated by a CVA (stroke), and other complications to boot. I am sole caregiver, and we communicate to one another well enough to co-exist, but I continually try to imagine how I would feel if I couldn't remember any of my life's experiences, since I was in grade school. I can't imagine how totally deserted and lonely I would feel, knowing i had 80 years of my life that were erased. How totally depressing that must be! I hope she doesn't realize how her life literally is gone, never to return. Her whole life now is what is in front of her and what is happening now. No yesterdays... only now! The girl I was married to for 66 years is gone! I now can only try to help her get what fleeting pleasures she can when she can get them. I recommend you do the same, as long as your devotion will persevere! Goodluck to you both!
Their Inability to a part of the here and now of reality and our inability to convince them that they are experiencing memory loss and that their new reality is not the current reality. Is tough! There past memories are usually on point, so those are the ones you embrace with them. Because trying to convince them that their current reality is off only frustrates the both of you.. ugh! It is so very heartbreaking to us. My mother forgot that her husband of 52 years had died, in her mind he was on a trip or something and would be back soon. But, as her caregiver I learned to not argue with her about it… just go along with her flow and say yep he’ll be back soon💔. When you learn to go along with “their flow” no matter what the (nonsense)may be, life is so much better❤️ We just want to make sure they are safe and live the rest of their lives comfortably and in peace❤️
Imagine going to another country where you do not understand the language or the culture. Every day things don't make sense and most people are not willing to help you understand or be patient while you try to learn.
That was spot on if you ask me. Their Inability to a part of the here and now of reality and our inability to convince them that they are experiencing memory loss and that their new reality is not the current reality. There past memories are usually on point, so those are the ones you embrace with them. Because trying to convince them that their current reality is off only frustrates the both of you.. ugh! It is so very heartbreaking to us. My mother forgot that her husband of 52 years had died, in her mind he was on a trip or something and would be back soon. But, as her caregiver I learned to not argue with her about it… just go along with her flow and say yep he’ll be back soon💔. When you learn to go along with their flow no matter what the (nonsense)may be, life is so much better❤️
WOW. Thank YOU for asking. What a power-ful question. This shows the depth of your compassion.
This is how I became more aware (not related to interactions with my mother, but my clients/work).
* I wanted to learn about dementia so I bought books. * I took TEEPA SNOW's webinars (for 1-1/2 to 2 years online). I highly encourage this way of learning. * I learned - by educating myself - how different parts of the brain (cells) dies and what parts of the brain do what - how they function and/or no longer function. This helped me feel COMPASSION.
* I put myself in another's shoes (they feel fear, are confused, perhaps have hallucination ... and can then fear bathing / showers due to being scared of the water).
* I learned how other senses are heightened with others go (i.e., mental clarity). i.e., the are keenly aware of tone of voice, smiles / non-verbal interactions, gentle touches (if approrpriate). - they KNOW when they are respected and/or disrespected / dismissed. ... know that they know this even if they cannot / do not verbalize it.
* Make eye contact when they are talking - and when you are talking.
I worked on myself for decades (before I started doing this work). I took communication and counseling courses / certifications as I was on a road to getting an MFCC (to become a therapist) although I didn't pursue that field / didn't get into a master's program. I became a fabric designer instead.
- Still I know who I am. I can set boundaries with others as needed. This was a learning process. It didn't just happen when I started working with elders. In fact, my first major client of three years was as difficult as anyone could be. I learned a lot from that experience (101 caregiver bootcamp as I used to call it). I then started reading and educating myself.
Education, awareness, understanding = compassion for another (and our self).
And, no matter how much we are aware and educated in this area, we can still get frustrated ... and that leads to KNOWING you need to:
- take breaks - take time outs (even if a few minutes to regroup - hire caregivers for 2 hours to however it can work out - take care of your own health / well being ... --- eat heatlhy --- exercise, get enough sleep --- have FUN.
Know when it may be time to research facilities for 24/7 care if needed. Get help / ask for volunteers at churches, networks, dementia association (in your area).
I believe there are books written BY people who have dementia - they know it and still able to talk / write about it. This is an invaluable perspective.
I hope this helps. I so appreciate you asking this question. It is quite remarkable to me, actually, that you would even think to ask. You are a VERY compassionate, loving adult child to your mom. P.S. Do not forget massage - you can do or hire a professional. We all need healing gentle touch. See what feels right to the person, everyone is different. A foot massage, hand massage, or head massage could be good too.
I would recommend Wendy Mitchell's book: Somebody I Used to Know: A Memoir Excellent book, especially if you want to understand what it's like to be living with early Alzheimer's Disease, as she was living it. Wendy is a brilliant writer and her blog is so inspiring
Wonderful question and very noble intention. Some elder centers do a teach-in for caretakers that uses props of all kinds to dull our senses: glasses that create a blocked myopic view, headphones playing two stations at once (one in each ear) and including white noise, ambulance sirens at times etc., there are pot holder mittens for the hands and painful pinching things for the feet. They give you instructions that you need to adhere to when you go into the room they've prepared. It is impossible to follow these instructions and when you get in, the room is set up with various tasks. It is impossible to fulfill the tasks without knowing what the tasks are- the benefit I found from this training is that, when I was trying my best, I was clearly aware that I knew exactly what I was doing and trying to trick the system by watching others etc. I failed miserably but the takeaway is that our LO's also feel 100% sure that they too understand what they're up against. Nevertheless, they are aware that they are failing continually and they can no longer express their frustration at this. It is very rare that someone with dementia actually understands that the dementia is shrinking their brain and with it, their understanding. I've never heard of anyone beyond the very first onset of dementia, who felt they actually had dementia or even understood what it is. We have had some success realizing that we can no longer bring our LO into our reality but that we must step into their reality and agree with them at all costs- Lying becomes inevitable and completely vital. We can say, Yes, indeed, you definitely did write the appointment down correctly and they messed up. I'm so sorry for your inconvenience... things like this- They will never believe that they are to blame for mislaid things or missed appointments. Eventually, they will need our help in every little thing. The beginning is in many ways, the hardest time- none of us know how to react and we keep trying to teach our LO what is going on. They are terribly frustrated with their inability to do what they have always done- they are angry with the world's clear misunderstanding of their intentions etc. It is a most brutal disease but if we can remain loving and cheerful without any kind of talking down to our LO's we will be able to have a more peaceful and even a beautiful time with them for longer... May you find your own balance and not be made miserable by those who know everything better than you. Your care is a miracle to this world.
Thank you all for your answers. My mom has LBD and sees things that are out of this world. Once people were having a pizza party and setting up chairs. They are so vivid to her. Now she yells out for her dad. I could no longer care for her and had to put her in senior living home.
I attended a dementia/Alzheimer's support group. They had a simulation where we had to put on glasses w/dirty lenses, put ear plugs in our ears, and gloves on our hands. Then we had to use a calculator to solve math problems, first w/problems written on a sheet of paper w/a pencil or pen and then different ones called out by the facilitator like "What is 100-37?" "What is 32 × 34?" "What is 156 ÷ 12?". Then we had to drink water from a cup and open up the bag for a simple snack, like a candy bar or a bag of Fritos or potato chips. Very eye-opening.
There is a book by Dale Bredesen, MD titled The First Survivors of Alzheimer's: How Patients Recovered Life and Hope in their own words. In it are stories from actual Alzheimer's patients as they journal their way through the disease. You can see their thoughts from their perspective.
It's tough (emotional) to read, but helped me to see some of what they were thinking.
There is a Virtual Dementia Tour being offered at some facilities. I personally have not tried it. I am probably going to experience having Dementia and already watched my parents live with it. Compassion, empathy, patience and open mindedness are important. We cannot be judgemental and hold on to grievances of the past. These are very vulnerable people that need love and do much caregiving.
This movie was very insightful and helped me understand the day in a life of. I watched it to better understand what was happening to my sweet mama. Fast forward 4 years and she’s in memory care. I feel so guilty at times to want to live my own life, but I couldn’t physically take care of her anymore 😢. And I was definitely burning out. Thank you for caring so much that you want to learn more. I agree with all the other recommendations. It’s a tough journey for all family members.
Check in your area for a virtual simulation that you can try. My SIL and I did it at a Iocal aging center who offered it. It is eye-opening and provides a sad realization, but it gives you a much better understanding of how your loved one is feeling and gives you greater empathy and patience with them.
There is actually quite a few different 60 minutes episodes on YouTube. I've seen an older one that was really good. Can't seem to find it now. I think it was 2011 , but there are other to.
If I find it I'll come back and let you know
Look up 60 minutes, episode about dementia. That will bring a lot up
Very good advice. 60 Minutes is on YouTube- all episodes on dementia. The one on Frontal Temporal Dementia is what my 76 year old husband has and it’s brutal. He’s in Skilled nursing and declining rapidly. It starts much younger than the others so you just don’t know what’s going on until you’re so perplexed at their change of behavior. My husband had a brain scan and there it was. Nothing like Alzheimer’s or LBD. I would just go on YouTube and type in 60 Minutes dementia and the episodes all come up.
Pick up the autobiography, My Journey Into Alzheimer's Disease, by Robert Davis. I believe his wife took over for Robert when he was no longer able to write and completed his book.
You can't understand what it is like to have dementia. My brother had diagnosis of probable early Lewy's Dementia. We often sat and chatted about what he saw, how he saw the world differently, how real his hallucinations were. He said he greatly feared the loss of mind he knew he was headed into, but was glad to know there were reasons for how he saw the world so differently. He was a marvel at telling me how he saw a scene we were both looking at. He saw a Diego Rivera Flower Market with calla lilies and men with white ballooning linen pants and big sombreros. I saw a van with large white fenders. So there you are. Welcome to the Forum. Thanks for filling your profile in a bit for us. Does it make a difference knowing how we saw the world differently? Not really. I would read everything the late Oliver Sacks ever wrote. Start with The Man who Saw his Wife as a Hat. My brother died before Lewy's could further rob him; for which both he and I were grateful.
I could cry. What a moving story. I hope my wonderful husband passes before this gets too severe. It seems to really be accelerating and he knows some things which is upsetting to me.
I'm not sure how this can be achieved since dementia causes chaos in the brain. They lose their short-term memory, inhabitions, abilities of reason and logic, their empathy, their sense of time and space, have bouts of paranoia and can develop aphasia. They can have delusions and hallucinations, and confabulate stories that are usually very dark and negative. This is far different than what it's like to lose one's physical abilities, so not sure how you or I, with all our cognitive abilities still intact, can relate to the demented mind.
Kudos to you for trying to understand your Mom's experience. I learned a lot from watching Teepa Snow videos on YouTube. She is an expert on dementia and caregiving. Some of her videos give great and detailed explanations about what dementia does to a person's mind and why. But she also give strategies to caregivers on how to better interact with our LOs with dementia for more peaceful and productive interactions.
My friend whose wife had Alzheimer's was able to witness first hand what his wife was going through by attending a class through one of his dementia support groups that allowed the participants to put on a virtual reality headset to get a glimpse into the world of someone with dementia. And I know that after that it gave him a whole new perspective and better understanding of this horrible disease of dementia, and what his wife was going through. The book The 36 Hour Day is also a good resource for you to read.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
by appreciating the opposite. thank your lucky stars that your mind is OK. seize your life to the maximum. thrive. be as happy as you can be. that will make your mom happy.
There past memories are usually on point, so those are the ones you embrace with them. Because trying to convince them that their current reality is off only frustrates the both of you.. ugh!
It is so very heartbreaking to us.
My mother forgot that her husband of 52 years had died, in her mind he was on a trip or something and would be back soon. But, as her
caregiver I learned to not argue with her about it… just go along with her flow and say yep he’ll be back soon💔.
When you learn to go along with “their flow” no matter what the (nonsense)may be,
life is so much better❤️
We just want to make sure they are safe and live the rest of their lives comfortably and in peace❤️
I posted the link earlier, but looks like it got removed.
There past memories are usually on point, so those are the ones you embrace with them. Because trying to convince them that their current reality is off only frustrates the both of you.. ugh!
It is so very heartbreaking to us.
My mother forgot that her husband of 52 years had died, in her mind he was on a trip or something and would be back soon. But, as her
caregiver I learned to not argue with her about it… just go along with her flow and say yep he’ll be back soon💔.
When you learn to go along with their flow no matter what the (nonsense)may be,
life is so much better❤️
This shows the depth of your compassion.
This is how I became more aware (not related to interactions with my mother, but my clients/work).
* I wanted to learn about dementia so I bought books.
* I took TEEPA SNOW's webinars (for 1-1/2 to 2 years online). I highly encourage this way of learning.
* I learned - by educating myself - how different parts of the brain (cells) dies and what parts of the brain do what - how they function and/or no longer function. This helped me feel COMPASSION.
* I put myself in another's shoes (they feel fear, are confused, perhaps have hallucination ... and can then fear bathing / showers due to being scared of the water).
* I learned how other senses are heightened with others go (i.e., mental clarity).
i.e., the are keenly aware of tone of voice, smiles / non-verbal interactions, gentle touches (if approrpriate).
- they KNOW when they are respected and/or disrespected / dismissed.
... know that they know this even if they cannot / do not verbalize it.
* Make eye contact when they are talking - and when you are talking.
I worked on myself for decades (before I started doing this work). I took communication and counseling courses / certifications as I was on a road to getting an MFCC (to become a therapist) although I didn't pursue that field / didn't get into a master's program. I became a fabric designer instead.
- Still I know who I am. I can set boundaries with others as needed. This was a learning process. It didn't just happen when I started working with elders. In fact, my first major client of three years was as difficult as anyone could be. I learned a lot from that experience (101 caregiver bootcamp as I used to call it). I then started reading and educating myself.
Education, awareness, understanding = compassion for another (and our self).
And, no matter how much we are aware and educated in this area, we can still get frustrated ... and that leads to KNOWING you need to:
- take breaks
- take time outs (even if a few minutes to regroup
- hire caregivers for 2 hours to however it can work out
- take care of your own health / well being ...
--- eat heatlhy
--- exercise, get enough sleep
--- have FUN.
Know when it may be time to research facilities for 24/7 care if needed.
Get help / ask for volunteers at churches, networks, dementia association (in your area).
I believe there are books written BY people who have dementia - they know it and still able to talk / write about it. This is an invaluable perspective.
I hope this helps. I so appreciate you asking this question. It is quite remarkable to me, actually, that you would even think to ask. You are a VERY compassionate, loving adult child to your mom. P.S. Do not forget massage - you can do or hire a professional. We all need healing gentle touch. See what feels right to the person, everyone is different. A foot massage, hand massage, or head massage could be good too.
Gena / Touch Matters
Excellent book, especially if you want to understand what it's like to be living with early Alzheimer's Disease, as she was living it. Wendy is a brilliant writer and her blog is so inspiring
It's amazing:
https://youtu.be/OUWOfDupmZk?si=9f2AQNzJOwgkPALg
They will never believe that they are to blame for mislaid things or missed appointments. Eventually, they will need our help in every little thing. The beginning is in many ways, the hardest time- none of us know how to react and we keep trying to teach our LO what is going on. They are terribly frustrated with their inability to do what they have always done- they are angry with the world's clear misunderstanding of their intentions etc.
It is a most brutal disease but if we can remain loving and cheerful without any kind of talking down to our LO's we will be able to have a more peaceful and even a beautiful time with them for longer...
May you find your own balance and not be made miserable by those who know everything better than you. Your care is a miracle to this world.
It's tough (emotional) to read, but helped me to see some of what they were thinking.
If I find it I'll come back and let you know
Look up 60 minutes, episode about dementia. That will bring a lot up
I would just go on YouTube and type in 60 Minutes dementia and the episodes all come up.
My brother had diagnosis of probable early Lewy's Dementia.
We often sat and chatted about what he saw, how he saw the world differently, how real his hallucinations were. He said he greatly feared the loss of mind he knew he was headed into, but was glad to know there were reasons for how he saw the world so differently. He was a marvel at telling me how he saw a scene we were both looking at. He saw a Diego Rivera Flower Market with calla lilies and men with white ballooning linen pants and big sombreros. I saw a van with large white fenders. So there you are.
Welcome to the Forum. Thanks for filling your profile in a bit for us.
Does it make a difference knowing how we saw the world differently?
Not really.
I would read everything the late Oliver Sacks ever wrote.
Start with The Man who Saw his Wife as a Hat.
My brother died before Lewy's could further rob him; for which both he and I were grateful.
video showing what Dementia looks like from the perspective of the person suffering from it.
Kudos to you for trying to understand your Mom's experience. I learned a lot from watching Teepa Snow videos on YouTube. She is an expert on dementia and caregiving. Some of her videos give great and detailed explanations about what dementia does to a person's mind and why. But she also give strategies to caregivers on how to better interact with our LOs with dementia for more peaceful and productive interactions.
The book The 36 Hour Day is also a good resource for you to read.