Does Heather understand speech? The big mystery…

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John and Heather's Dementia Journey

John and Heather's Dementia Journey

Күн бұрын

Пікірлер: 331
@cmarie5774
@cmarie5774 12 күн бұрын
Her brain might have problems, but her heart knows. You'are a fantastic husband & care giver.
@idimontalvo8212
@idimontalvo8212 12 күн бұрын
Heather is blessed to have you in her life. With a few tears, God bless both of you.
@JohnvanGurp
@JohnvanGurp 12 күн бұрын
@@cmarie5774 ❤️ thank you!
@christineholland6063
@christineholland6063 12 күн бұрын
Never alone John. But lonely. Lifting you and Heather in prayer.
@colemant6845
@colemant6845 12 күн бұрын
The Heart is Not connected to the Brain. Sad but True. She does knot know.
@reality_is_the_key
@reality_is_the_key 11 күн бұрын
Well put. The heart always recognizes people we love. I am certain of that.
@allenkarpe4168
@allenkarpe4168 12 күн бұрын
The heartbreaking aspect of this disease is that there are moments where the person seems to emerge from the fog just a bit, only to recede again. She obviously feels safe and loved, and that’s everything you can give her.
@carlosassuncao2380
@carlosassuncao2380 12 күн бұрын
And It made ALL the difference in her well being
@DaveDabomb
@DaveDabomb 12 күн бұрын
Such a great comforting comment!❤️
@23oakhill
@23oakhill 12 күн бұрын
You are certainly not alone. Yes I think Heather is able to hear but not process what she hears , she can mirror your mood by smiling or laughing when you do. Does she get frustrated at times ? I think the period when frustration is very obvious, is the most difficult for the carer , but I think you may he past this phase. She does feel safe and loved, and she can go on feeling safe and loved where ever she is.
@eileenreed5642
@eileenreed5642 11 күн бұрын
She understands she loves you and thank God she is in a good mood ❤
@deanawells4395
@deanawells4395 13 күн бұрын
I agree that Heather being very engaged for having dementia. You are blessed to have her calm, non combative demeanor.
@roadwayrona
@roadwayrona 13 күн бұрын
I don't know if she knows who you really are but from the way she looks at you and interacts with you I'm sure she fancies you!
@JohnvanGurp
@JohnvanGurp 12 күн бұрын
@@roadwayrona 🥰😝🤣
@LifeBirthtoDeathbyLynn
@LifeBirthtoDeathbyLynn 12 күн бұрын
I LOVE this ... and agree. Some things are up and down ... and come and go. I love the way you put this! EVERYONE, stay positive!!!!! yana
@LorraineLeduc-i7z
@LorraineLeduc-i7z 13 күн бұрын
My Dad took care of my Mom who had dementia for 15 years, just keep smiling, hugging, touching and telling her that you love her.
@barblark2728
@barblark2728 12 күн бұрын
So much of communication is nonverbal. Looking Heather in the eye, pausing when you talk, your voice inflections, your smiles, your laughter, the way you lean in when you talk to her… all of those things invite her interaction. And interaction is connection. You do all of those things so naturally. It’s lovely to watch.
@angelaluster2026
@angelaluster2026 12 күн бұрын
You should keep talking to her as if she understands. Sometimes she will, sometimes she won't, and sometimes you won't know either way. It would be so scary and frustrating to not be able to communicate. Don't say anything you wouldn't want her to hear around her. I think she understands more than you realize. Her hair is so beautiful and thick.❤
@SweetMama1999
@SweetMama1999 13 күн бұрын
What a treasured memory to have w/ Heather. Tone is everything, even if she doesn’t understand. She knows she is loved and that is a blessing. You are an amazing husband, John.
@DebRus56
@DebRus56 13 күн бұрын
She's a lovely person even now. Not everyone is laughing with a beautiful smile that has her diagnosis. The essential woman is in there. Take heart.
@RV-there-Yet
@RV-there-Yet 12 күн бұрын
This👆, yes~ clearly she is. Such a peaceful, positive soul.
@d14551
@d14551 12 күн бұрын
I think it's a great idea to keep talking to Heather as if she understands. I think the sound of your voice and the expression in your voice and your face mean a lot to her - even if she's not understanding the content. That's what I did with my mom and I know she liked it.
@cjhoward409
@cjhoward409 12 күн бұрын
I think with memory loss, there’s still familiarities with older memories. I used to sing hymns to a lady I took care of, who decades before, was a choir director in her church. THE only thing that calmed her down and she sang along with, was some of those old hymns
@pcaito857
@pcaito857 12 күн бұрын
Please convey to Riza that your on-line community appreciates the great care she gives to Heather and the invaluable assistance she provides to you. Regarding mirroring and her "yup" responses, it would be interesting to check her reaction to questions where you know that her response would be "no" if she still had speech. I agree with the suggestion about her career being highlighted on the poster. Seeing Heather as a colleague, "one of us", very well could impact how staff relate to both Heather and you.
@B.LO.08
@B.LO.08 13 күн бұрын
The picture of her was wonderful. She is precious.
@missiris1234
@missiris1234 12 күн бұрын
Sometimes Heather looks uncomfortable or confused. Other times she looks at you for reassurance. She laughs often, a good sign she feels secure ❤
@cjhoward409
@cjhoward409 12 күн бұрын
The disease has better days and some bad days and tends to flip flop sometimes
@catherinehensiek1941
@catherinehensiek1941 12 күн бұрын
Heather’s hair is so pretty. And she looks like she is enjoying the conversation. Keep chatting with her, John. It seems like it is good for both of you.
@EbonandEli10
@EbonandEli10 13 күн бұрын
When I was studying education at university, I did a paper about early childhood development and how certain things affect the growth of the brain. You remind me of that paper because what I understood is that when you smile and she smiles back, there’s a part of her brain that if she were a child would be developing and growing. And the wiring would be in a very positive direction for the personality. So, when I see you smiling and her smiling back, I think you are helping that part of the brain to possibly rewire or maintain itself. That’s just a guess, I don’t know for sure. And we know at some point it will probably go. But with your smiles, maybe it will be the last part to go. ❤
@SpiltMilk101
@SpiltMilk101 12 күн бұрын
This! You are absolutely right.
@skyhousegrandma2526
@skyhousegrandma2526 13 күн бұрын
Your shows are so helpful. My husband and I are not as far along in his dementia journey as you and Heather, but it helps to know what to expect and plan ahead.
@charlenecardwell8288
@charlenecardwell8288 13 күн бұрын
I’m so impressed with the gentleness of both of you and how loving you are to each other. I know Heather can’t say the words I love you or even be extremely demonstrative towards you, but you can just see the love in her eyes when she looks at you. Also, my guess is that she was always a gentle soul and not prone to grumpiness or anger before this happened. When I watch your videos, I don’t feel pity or depression, but I sure do get a good picture of true love. God bless you both. ❤️
@susanfeneley
@susanfeneley 13 күн бұрын
@charlenecardwell8288 Such a lovely comment. 🐦
@JohnvanGurp
@JohnvanGurp 12 күн бұрын
That’s exactly how she’s always been… we’ve always been affectionate and gentle and loving together.
@dianeohrt257
@dianeohrt257 13 күн бұрын
Every little smile you get from Heather is totally worth the effort. I love how you gently touch Heather’s face. She feels that for sure and isn’t startled by your loving touch. Keeping you both in my prayers. ❤
@CandaceH-w9e
@CandaceH-w9e 13 күн бұрын
I'm so glad has you as her partner. Your love for her SHINES through in all your interactions with her and all your comments about her.
@tullophile
@tullophile 13 күн бұрын
It is truly mysterious. We are all here for you, John. I'm glad that discussing it out loud eases your burden and makes acceptance a bit less difficult. You are a model care giver, and we are just in awe at your tender, undying love for the Viking Shield Maiden! Keep on smiling, John. She can still feel that you love her and want her to be happy.
@marilynkozlow8400
@marilynkozlow8400 13 күн бұрын
In the early stages of dementia, my grandma said it’s like fireworks constantly going off in your head. I think about that conversation often.
@susanfeneley
@susanfeneley 13 күн бұрын
@marilynkozlow8400 Many thanks for your comment. It's many years since I was caregiver to a nice lady with Alzheimers and Parkinson's. But even now your words (or your Grandma's) help me to understand. Many thanks. Blessings. 🦋
@cindygaudet1390
@cindygaudet1390 13 күн бұрын
Take whatever laugh and smile as you say because you-are so fortunate she is like that. Such a sweet soul.❤
@littlelittledeer1435
@littlelittledeer1435 12 күн бұрын
My eyes are full of tears from seeing 16 year old Heather's braids. Thank you again for sharing your life with us.
@kathyf7862
@kathyf7862 12 күн бұрын
I think she does understand more than you think!! My older brother has a different dementia, but after several years, I'm shocked at what he'll say or respond to. It's not consistent but so encouraging. Keep the connection going!! 💞🙏
@cherbee1
@cherbee1 12 күн бұрын
You are an amazing husband. You never give up trying to communicate with her. Maybe she is mirroring you, but her facial responses indicate she feels safe, comforted, and loved whenever she sees you smiling at her. Otherwise, I doubt she would respond at all. Her heart does knows.
@marlysmithsonian5746
@marlysmithsonian5746 11 күн бұрын
I went through this with my mom. I worked in Hospice care before her illness and mostly had Dementia patients. It does not help. We learned that their brains become swiss cheese. Meaning, calcium deposits take spots in the brain and they don't come back. Most patients, including my mom, had magnified personality traits while able to connect. She was hyper paranoid, aggressive and mean. I had to have her taken in on a behavior crisis and that was the start of my heartbreak. I hadn't seen her for years because she was calling the police on my over 100 times a year, my brother over 250 times a year and they refused to do anything with her. Families are unable to and my mom hadn't been to a dr in over 20 years. I'm so grateful you are able to be with her through this, my heart will remain broken because of her behaviors. She showed signs in 2004 and passed away 2 years ago. There are so many going through this, God Bless You.
@desertbluecatnm
@desertbluecatnm 12 күн бұрын
My Mom had dementia. As she became nonverbal in first in assisted living and then in the Memory Care Unit, we used a photo album to connect with her. It was obvious that she recalled people, especially in photos of family in earlier younger years. It was very comforting for us. I treasure the memory of the last time that I knew for sure that she knew who I was. It's been 5 yrs since her death. I still shed tears at that memory of her recognition, joy, and surprise to see me. Although Heather may not understand the meaning of the words you speak, I'm sure she feels your love in your tone, your presence, your touch and your daily care for her. My last memory of my Mom is putting lotion on her hands and feet. She may not have known who I was, but I'm sure she knew I cared about her. Thank you for sharing your life with Heather with us. It helps me work through my lingering grief about the last 5 yrs of Mom's life, and death. Have you read "The 36 Hour Day"?It's a wonderful book for dementia caregivers. You may find some wisdom in it.
@Mari-B
@Mari-B 13 күн бұрын
John, this is so beautiful and sad. Each person with this terrible disease is different. I have seen it in our family. But, it clearly shows the love the two of you have, and it appears that Heather still has that connection sometime in some way. We will never know some of it. I don't miss a video or short. I don't comment as much as I am dealing with health issues that most days send me into deep depression. I say this as my condition has my husband of 58 years my major caregiver. He puts me first as you do for Heather. But, I am able to communicate with him and understand him! I am so appreciative. Heather is so loved, and somehow, I think at times she feels more than we can understand. You are giving her such a love. You are strong, John, and I pray for you... and Heather.❤🙏🏽 Also your family! May God give you strength and peace as you do the best for your precious wife.
@hillarywattenbarger3203
@hillarywattenbarger3203 12 күн бұрын
Her laugh warms my heart! I know she can feel your love, keep loving her ❤️ You’re doing great, John!
@Newaccount2023-b9d
@Newaccount2023-b9d 10 күн бұрын
Hi John, thank you for sharing your story with Heather. I am home with my parents in NB helping with my Dad's dementia. Your story helps me understand my mom a little better. I have been living away from my parents for most of my adult life, but she has been with for almost 60 years. I appreciate your candor and insight. God bless you both.
@pattim9617
@pattim9617 13 күн бұрын
It’s wonderful to see Heather smile and laugh. She has such a sweet temperament and you are so lucky for that. I agree that she is mirroring your emotions but that is a great incentive to be happy when trying to communicate with her. Deep down inside I think she knows you and that you will be loving and patient with her. I love the picture with the information about her for her room. Take care💕
@Perfumelady828
@Perfumelady828 13 күн бұрын
You’re a great husband!
@debis.3197
@debis.3197 10 күн бұрын
We did that with our daughter in law when she suffering from a terminal illness. It was an effective reminder to medical staff that she was not always emaciated, sick and disabled. It does help. She died at 41 in 2022. John , you’re doing a great job.
@sundoesshine8583
@sundoesshine8583 12 күн бұрын
Even if just mirroring, she seems to be truly Feeling the emotion of joy which is all that matters. I agree, she is Soo vibrant physically. I think your engaging with her so much is responsible for the little glimpses of understanding (even if nonverbal) which we still see. It's a win!
@stephaniewhittle6269
@stephaniewhittle6269 13 күн бұрын
Thank you for sharing Heather with us.. This series is so honoring to her. And sharing not only who she is- but also who she was- lets us all love her too. I am a caregiver as well. Blessings to you.
@brigittecrawley1872
@brigittecrawley1872 13 күн бұрын
Happy you feel that Heather is still in there somewhere. Enjoy everyday!
@earthangel8730
@earthangel8730 13 күн бұрын
The final picture from only 3 years ago is as beautiful as it is heartbreaking. ❤
@lifeandluggage
@lifeandluggage 6 күн бұрын
There are videos like this one that make you wish there was something better than just a "thumb up" to react to it. You're both lovely!
@susanchadwick-jk9xy
@susanchadwick-jk9xy 13 күн бұрын
Heather may not understand a lot of what you say but she picks on the love and gentleness she feels. Having worked with dementia patients I think sometimes an odd word or action triggers something in their memory and you get the smile. Some dementia patients retain some little far back memories. As for her lovely skin and hair that's due to all the love and care l she receives. Just keep doing what you do your doing great.❤❤
@sharpcanines3347
@sharpcanines3347 12 күн бұрын
I am so grateful for you and Heather sharing these videos with us. As a retired psychotherapist and student of psychology, you are providing us all an educational window.
@tpippen75
@tpippen75 11 күн бұрын
Theresa mirrored me in the same way John. You’re doing a tremendous job with Heather and an extraordinary service to the community. Your videos make me think of Theresa and really tug on my heart. Much love to you both
@JohnvanGurp
@JohnvanGurp 11 күн бұрын
@@tpippen75 thank bro… the feeling is mutual, and I think of you and Theresa often.
@ceebeecee56
@ceebeecee56 13 күн бұрын
A video or two ago when you were showing older video, I saw that when you were playing catch with Heather you old her to back up and she did, I was amazed. To watch her slip away and lose that understanding is sad. YANA
@sundoesshine8583
@sundoesshine8583 12 күн бұрын
I agree. I thought the video was going to be Heather a few years back. But seeing her her just recently be able to do these simple things makes you realize what comprehension she's lost since we've been watching.
@amyberg1413
@amyberg1413 12 күн бұрын
It's so hard to tell, she really does seem to engage at times. She is bird-like the way she listens and looks at things. We can only hope that she does comprehend some things. She never looks frightened, angry or frustrated, it's remarkable, she is fortunate in that way. I know it is because of the upbeat vibes you give her John. She is so well cared for. Her laughter is beautiful, she has a beautiful soul, as do you. Loved, the picture of her when she was a teenager! She looks the same. The framed poster for the care center-ingenious! It is important for her new caregivers to see who she was, and to know that her family cares enough to make such a great tribute to her life. Every day you are helping others learn to navigate this cruel, disease that is full of anomalies. The brain is such a mystery. As always thank you for sharing.
@suesabookfanatic
@suesabookfanatic 12 күн бұрын
Seeing Heather on this video, she does look very well and extremely cared for, thats the difference, she is contented and happy x
@ChaiLatte13
@ChaiLatte13 12 күн бұрын
I definitely agree that she is mirroring. I noticed that she would mimic your facial expressions for sure. I think the poster and also having photos of her is a great idea!
@brenekins314
@brenekins314 13 күн бұрын
A very hard part of navigating dementia journey is not knowing what they understand-I always spoke normally as if they understood- though often felt like I was carrying on a conversation with myself- humour is good medicine 😊 Now I have to find the reserves to help my sister support her husband diagnosed with early onset Alzheimer’s- have cried a few times cause brings back memories and know the journey she will be taking- I keep saying in my head stay strong!
@sundoesshine8583
@sundoesshine8583 12 күн бұрын
The poster is Perfect! It's hard when you meet a dementia patient after they're sick. One usually sees pics of the family & patient, and as the caregiver, it sort of makes one feel on the "outside". The poster sort of introduces her to everyone as an equal and makes one feel welcomed into her life. I also think it helps us all realize Heather could be ANY of us, thus care for her not like a patient, but friend.
@susanfeneley
@susanfeneley 12 күн бұрын
@@sundoesshine8583 Amen to that!
@purplgrits7916
@purplgrits7916 12 күн бұрын
Wonderful poster, it will definitely help
@SweetSassyBull
@SweetSassyBull 13 күн бұрын
I often think of both of you and your journey. The frustration of not knowing what Heather understands and what she doesn't must be overwhelming. What is so blatantly clear and obvious is how calm, safe and protected Heather is with you.
@SandyTCF
@SandyTCF 12 күн бұрын
I have supported people, mainly children, who have never spoken. And these questions have always bubbled around my brain. My experience with mainly older people with dementia has been that there are these moments that seem like total clarity. And then the moment passes. What I think is terrific and what you just seem to do naturally is when you are on camera with Heather (as opposed to just you or with another person without Heather) you ALWAYS include her in the conversation. You don’t talk ‘about’ her as much as you talk to us with Heather. If there are moments of clarity then she knows in those moments she is being treated with dignity, love, respect and care. I have no doubt that she knows your energy, she feels it. The brain is so complex and mostly unknown. And the spirit even less known. Love to you both. Sterkte.
@G.L.McCarthy-vr1oe
@G.L.McCarthy-vr1oe 13 күн бұрын
We never know what is or isn't understood, so we always go head as if the understanding is there. Hard when Heather can't give a concrete answer, but John you get a real response with every smile, laugh or yeah! YANA🤗🤗
@vs0063
@vs0063 13 күн бұрын
I feel so bad that Heather has had such an advanced decline but I'm thankful she has you John. So much of the life she does have comes from your love for her. I'm glad you are able to have her someplace where she will be cared for 24/7. As a caretaker myself for my Dad with prostate cancer and dementia, it is very challenging and sometimes draining. But my Mom, brother and I keep pushing forward. We may need to do the same for Dad in the future. He's 90 years old and.Mom.is 87. I worry that we'll miss something with Mom with our attention so focused on Dad. She doesn't like taking pills or going to the doctor, worked in the medical field. Sending love and hugs to you and Heather. 🙏 ❤
@5heinens
@5heinens 12 күн бұрын
John, this helps so much for families who are new to this. Thank you so much for explaining things so we can understand, showing us simply daily examples and for showing us how to actually “care” for Heather. Not “take care of her” but really care. Thank you!
@kmagee6286
@kmagee6286 13 күн бұрын
Peace. Found your channel by accident. I take care of my loved one from right side stroke 2.1/2years ago. You are a blessing to your wife, seems to me.
@beadqueenelaine
@beadqueenelaine 10 күн бұрын
The sign you made was a wonderful idea. She is not her illness. There was so much to her life prior to her illness.
@j9mac934
@j9mac934 13 күн бұрын
Sweet and heartbreaking all at the same time. Heather's fortunate to have you looking out for her best interests.
@Hope-Lenders
@Hope-Lenders 12 күн бұрын
I love your poster idea! What a nice way for her caregivers to connect to her. Keep talking to her, telling her you love her. She connects to emotions long after her memories are gone. She feels your love and compassion even if she can't let you know. Heather has such a beautiful smile. God love her! Blessings!
@carole8635
@carole8635 13 күн бұрын
Very cool poster, brilliant!
@annmarie8574
@annmarie8574 12 күн бұрын
You are absolutely right. Her skin color and tone and her hair are beautiful!
@beverleydryland1146
@beverleydryland1146 12 күн бұрын
Your kindness and engagement with beautiful Heather keeps your connection please enjoy your lucid moments x x
@JenniferWaite63
@JenniferWaite63 13 күн бұрын
I've been told, that some do know what is going on, but can't respond. The disease takes away their ability to speak, which must be so frustrating for them. I've worked with dementia residents. It truly has its challenges. I've found that fresh air, especially in spring and summer, is uplifting and physical activities to music. Pets and babies also a plus. I used to work in a nursing home. . The things I've mentioned, are just what I observed.
@karenjoy136
@karenjoy136 11 күн бұрын
These more clear moments are a gift .. AND it can be painful when our loved one reverts right back to their more declined state .. “ oh you’re here! Wait.. where did you go ..? I think she is gathering cues in a holistic, intuitive way when you speak to her.. yes, certainly mirroring you, but with a bit more of her intuitive interpretation added in. When she laughs , she seems to know when you’re being playful with her. She still knows you adore her.. oh, and that little poster you made is brilliant for all the reasons you already know! Important for your process to create this in preparation for her next step ✨
@wowenne3050
@wowenne3050 12 күн бұрын
Sending you both much love John and Heather. I learn so much from your channel. 😢❤
@vanessawhite8229
@vanessawhite8229 12 күн бұрын
Your deep love and attention towards Heather is what keeps that connection strong. I've worked (lived in) with many clients with various stages of dementia, those that were aggressive, withdrawn, and completely regressed were the ones that usually had little to no interaction with friends and family. I often observe Heather's facial features mirroring yours, when you smile and speak with a pleasant tone is when you see that light in her eyes. The connection you share is so beautiful ❤
@janetbailey6639
@janetbailey6639 13 күн бұрын
When my Stepmom was in a Nursing Home she was alert and if not she was a sleepyhead she was there 2 yrs but 1 time my Dad had been sick for over 3 weeks and so he couldn’t visit her when I took him to see her after that she saw him coming into the day room and perked up and when he went to ask for a kiss she gave him a smooch he told her I Love You and to our surprise she said I Love You too, she hadn’t been talking for quite some time so never think they don’t have lucid times😊
@lindseypilz9667
@lindseypilz9667 11 күн бұрын
That picture of her when you and her started dating is precious! I love the poster you printed for Heathers room! Amazing idea!
@theresafoster2353
@theresafoster2353 13 күн бұрын
What an amazing life you both have had. I think you are doing a wonderful job, people will understand what it’s like to be in your position.As a caregiver. You are doing the best for both of you by putting her in a care facility. Sending prayers from Eastern Nebraska ❤
@theresafoster2353
@theresafoster2353 13 күн бұрын
Won’t understand
@scoobydont5299
@scoobydont5299 13 күн бұрын
This was uplifting and heartbreaking in equal measures. Heather as a 16 year old was beautiful. I can see why you chased her. I can’t say that she understands you, but believing it is a comfort ❤️🏴󠁧󠁢󠁳󠁣󠁴󠁿
@jenniferharris-ux5vx
@jenniferharris-ux5vx 11 күн бұрын
That has to be so hard. She does seem to mirror you, but she expresses happiness, which means she feels loved and secure with you. I love her hair. You two met young, looks like! Love seeing the vibrant Heather of yesteryear and hope you will share more of your life together. I'm sorry both of you are going through this.
@buddyneher9359
@buddyneher9359 12 күн бұрын
That's an excellent sign you have made for her eventual room in LTC. Absolutely, it is very good to let the caregivers know that Heather is "one of us" (from their point of view). Also your agreement with her to "take every day we get." Yep, it's so good to be conscious of that as often as possible. Big virtual hug from Vancouver. 💕
@karenvm7104
@karenvm7104 12 күн бұрын
Your creation for Heather's room is wonderful!! As a health care provider myself, I always enjoy knowing about the "personal" side of my patients/families. Such a GREAT idea! I may steal your idea and create one for my sister's room. Thank you as always, for sharing.
@mercywilliams2698
@mercywilliams2698 13 күн бұрын
Hello John and Heather..🌷💞🗾🎯 I mostly read everyone’s accounts here. I know I have tried to be specific at times to my own situation. John has been more than kind to respond. My hope is that my brain injuries as a two year old that my mother failed to disclose to family physicians and teachers left me in a world of apparent normal function when in point of fact I wandered on a daily basis…in an out of altered states and a partial ability to comprehend and learn everyday tasks. I mention this because at age 68 I watch dementia in others which included my grandmother and mother in earlier times. I now recognize I have a form of aphasia which means I understand many things but cannot describe my understanding to others. This includes the many things I have recovered with time including making artwork. I cannot describe that I have a sizeable body of work. I reference it in simple declaratives family and friends mistake for nothingness. The only validation I have for years of teaching myself self expression are the studio that is my apartment and the art works of one sort or another on the walls. Because I cannot substantively describe what I have..there is no communicating with an agent or a gallery for example. Years ago I tried this without success. I always sounded simple minded when my mind was full with the burgeoning experience of learning very basic ways to make visual renderings of my thoughts. I did manage to earn an art degree with no specific skills. I spent hours in my studio learning to put odds and ends together. I had a way of coming up with rendering political thoughts that became collage art. But I ran out of space in my apartment so the larger art came to an end decades ago. Making art on small surfaces was for years very difficult. My spatially is like many things partial not whole. I write all this because while I do not know Heather’s visual and personal landscape..her cheerful demeanor suggests she has accepted her partial status in this life and she recognizes idiosyncratically what she can. The rest is not relevant because there are too many missing links. Recently a smoke alarm went off in my place. When I couldn’t reach my manager I had to call 911. When the firemen arrived they wandered in my little space checking things out. They determined I had several extremely outdated alarms. Everything checked out. But what really interested each was my art life! Who is the artist? Is this your art? Yes..I said. Wow! This is something I have experienced time and again. People who know me think my art life is nothing. It isn’t even a conversation piece. It is who I am. Because for me it always holds out the possibility someone will understand I have spent 35 years working on bridging the gap between a partial relationship with the everyday and a more complete one.. Service crews the cable guy the fireman they come in the door and immediately they see how relevant the visual life is for me. But for friends they listen to my words and they cannot comprehend my own reality. I hear them and I say things back but there is also much I don’t get. Yet few discern that. Dementia is a fading relationship to things. Yet there is a spectrum of relevancy and everyone’s own individuality portends the bits and pieces that connect us.
@JohnvanGurp
@JohnvanGurp 11 күн бұрын
@@mercywilliams2698 thank you for your fascinating story here… I really appreciate it! Very best wishes to you going forward.
@margaretconnery7422
@margaretconnery7422 13 күн бұрын
It's heartbreaking that we don't know if our loved one's understand us or not ,just keep on doing what your doing and tell Heather how much you love her and be gentle in tone and touch . 😊 ❤ xxx
@claret6937
@claret6937 13 күн бұрын
I think she does have understanding and is able to say some words with meaning and I think she understands happy tones and cadence and that she knows that is happy. One lady, who I knew who was living with dementia was unable to say anything but loved to have her knitting things with her. I looked at her knitting and said "Pink" and she said "Pink" and smiled and then said "Yes pink!" The connections had fired and the fog had cleared momentarily. She very occasionally said "Pink" again but nothing else.
@cindifischer6919
@cindifischer6919 13 күн бұрын
I'm sorry for you, I'm sorry for Resa that she has to be going through this. I'm very glad for you that she's not mean or combative and I sure hope that you have help this weekend while Resa is gone. Such a cruel worthless disease that I will never understand why so many have to suffer. You seem to be handling it well with help and support, peace.
@cremebrulee4759
@cremebrulee4759 13 күн бұрын
Rissa (is that spelled right?) is such a wonderful caregiver, as shown by her taking the time to braid Heather's hair so beautifully. It's impossible to know what Heather understands verbally. I think she understands the energy of emotions, and the loving energy you give to her makes her feel safe and loved. I get teary thinking about the loss for both of you. You obviously shared a deep love and a deep connection. I think the connection is still there for her even if she can't express it. YANA
@kookykreek
@kookykreek 12 күн бұрын
My sister had FTD and frontotemporal dementia, and it was heartbreaking trying to communicate. At first she understood, but over time she could not understand most things said. However, she would mirror my actions. I actually commented this to you many months ago. I continued to communicate with my sister as if she was totally normal until her last day. I smiled, and laughed, and so did she until about a week before she passed. Heather, just like my sister, definitely knows she feels safe with you. It’s so hard. Hugs!
@margaretfrise8047
@margaretfrise8047 13 күн бұрын
She knows you are someone important to her that is very kind and gives her love, personal care and attention; and that will be even more important when she moves to her new lodgings to have that one-on-one with you. You are a great couple!
@sherriouellette8832
@sherriouellette8832 12 күн бұрын
Thank you so much for sharing your journey.A close relative of mine has been diagnosed with early onset Alzheimer’s, and it’s so scary. Shes only in her mid 50’s. She’s in early stages now, but the unknown future is seems daunting, so we are trying to focus on today and while we plan for tomorrow, we don’t live there. Seeing how this has unfolded in your life helps.
@glitterBomb423
@glitterBomb423 12 күн бұрын
She understands you if you talk about present things, but gets confused when you ask, "do you remember". Her eyes change and her head drops. I've always heard you don't ask them to remember, just live in the present because it does really matter if she remembers. She is happy. jmo
@1RodeoMom
@1RodeoMom 12 күн бұрын
Those moments are priceless when they are lucid and able to look at you! The Love of a Man is incredible and you show to her and share it with us! You are her Hero!! God Bless!! That sign is awesome for her room also. Debi W
@BellaLee444
@BellaLee444 13 күн бұрын
I believe that Heather would take care of you if it was the other way around. She’s a beautiful soul!
@shayna.e.111
@shayna.e.111 12 күн бұрын
❤ So loving and so sweet. Enjoy what you can. That’s all we can do as individuals Much love to you and Heather and your family.
@penni6432
@penni6432 11 күн бұрын
I agree with you John. I think she does understand more than what can be seen. As an RN, I've never underestimated what someone's brain is doing to them and what they may still be able to understand. She's lucky to have you.
@cyndykated1083
@cyndykated1083 12 күн бұрын
A quote from my favorite singer..Life is terrible and beautiful and strange (Johnette Napoliano)❤. You are an amazing partner..you have known each for so long. The little poster of her is a great idea❤❤
@MaryKnowles-p1k
@MaryKnowles-p1k 11 күн бұрын
I think adding information about her past career is an important piece of her story. When my mother had dementia and lived in skilled care her carers always enjoyed learning more about her earlier life. It helped round out the person they cared for and loved.
@kathysteffek879
@kathysteffek879 12 күн бұрын
we are here for you John. you're a good man.
@dawnstarling1348
@dawnstarling1348 13 күн бұрын
When you laugh, Heather laughs, I'm sure there are fleeting moments when she understands, She is such a lovely looking woman, She understands your love for her and that's the most important! One thing to be grateful is she isn't like my Mum was... who was so frightened all the time it was criminal...😢 She cried a lot, Heather seems happy within herself xxx
@SandiSquiller-zs1zu
@SandiSquiller-zs1zu 12 күн бұрын
Thank you for also being a part of mine ❤️it is so hard I’ve texted you before I live in northern Wisconsin and care for my mom 98 ,brother and my husband 82 its a hard lonely journey thank you 🙏
@periwinkle-dragonfly
@periwinkle-dragonfly 12 күн бұрын
💗💗💗 Stay strong Sandi.
@hildatyburczy8221
@hildatyburczy8221 12 күн бұрын
Loved her teenage photo, so pretty! The plaque for the long term facility is excellent…..God bless you and Heather!!
@user-to8rm1vs5n
@user-to8rm1vs5n 13 күн бұрын
I watch you everyday and cry because I remember the feelings of your difficulty with your new normal. ❤
@philharvey3279
@philharvey3279 12 күн бұрын
You are so positive John. Even if Heather is mirroring your expressions and mood, rest assured because she is feeling love and warmth, she feels just that. Stay strong, this is a long and lonely journey but you are strong and love enough for both of you. Just remember to look out for you too because if you don't look after yourself first you won't be able to give Heather the best of you. Fabulous informative and helpful videos. Thank you 🤗🤗🤗
@septembercindy
@septembercindy 9 күн бұрын
John you are doing the best that you can in your situation. Heather is fortunate to have such a dedicated husband ❤🙏
@allisonspeer649
@allisonspeer649 12 күн бұрын
Great idea to make the little poster about Heather and her Life. I think sometimes she does understand, she is still there but even if she is just mirroring, it is great incentive for you to be positive around her, I totally agree with you on that point. I feel like even if she doesn't "Understand" the way we would, she does feel the love and caring you have for her.
@Jazna1
@Jazna1 12 күн бұрын
Gosh, these two are so beautiful together. That photo of a teenaged Heather is sweet. Every one of us should have a spouse as loving and devoted as John. God bless.
@ptanji
@ptanji 12 күн бұрын
Such a great teaching video. Thank you John And thank you dear Heather.
@luannestrickland4199
@luannestrickland4199 13 күн бұрын
I so enjoy seeing you both interact and knowing she’s loved and safe with you. Take what comes and cherish the good memories
@smspiwak1956
@smspiwak1956 12 күн бұрын
Much admiration of you. Hang in there!
@ForeverUs1
@ForeverUs1 13 күн бұрын
My father didn’t know who I was but he was comfortable being around me, which meant the world . I was the nice lady who brought him a coffee and donut every morning
@G.L.McCarthy-vr1oe
@G.L.McCarthy-vr1oe 13 күн бұрын
What a gift for your Pop, to have you constantly around! Donuts & coffee☕
@ForeverUs1
@ForeverUs1 12 күн бұрын
@@G.L.McCarthy-vr1oethank you, his favorite was a Tim Hortons honey cruller. He opened that little bag every morning like it was the first time he’d ever seen one . Core memory
@bonniemorgan8277
@bonniemorgan8277 12 күн бұрын
She's in there, John, and it's so obvious your love for each other❤❤
@SerMattzio
@SerMattzio Күн бұрын
It's really clear from how calm she is that she feels safe and loved. You're doing a fantastic job. Also I may be totally wrong, but at 6:42, it sounded to me almost like she is trying to say something like "Alright" when you say you're going to keep talking to her.
@JohnvanGurp
@JohnvanGurp Күн бұрын
You might be right!
@shannonkaypaperieshannonja1918
@shannonkaypaperieshannonja1918 12 күн бұрын
My mom has Alzheimer’s and has been in care for 4 1/2 years now. She doesn’t speak much any more. I think her awareness is very fluid. It comes, sometimes for about 30 seconds, and then it goes. away again. She’ll look up and see me and exclaim “oh, hello!!” and by the time I can respond to her, I can see the awareness dim out again. My aunt and I were sitting with her and having a conversation while she was sitting in her own world in between us, when all of the sudden she made an emphatic sound of agreement with whatever we were saying. We were both stunned! And then we had the soundtrack to Evita playing and she would have sudden moments of awareness and bobbing along to the music and then just as suddenly go back quiet again. It different for everyone and as time goes on the awareness is less and less but I believe she is still in there. That’s what I live for, those brief connections with her, the woman she used to be. Sending love to you both.
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