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A New Mindset for Love in the Time of Dementia

Posted by georgescraftjr @georgescraftjr, Apr 30 11:42am

All my life, I have been adventurous. People say that I rise to challenges by "pushing the envelope." So, in keeping with that sense of adventure, I look at this stage of our marriage as a continuation of an adventure George and I started 30 years ago.

There are no road maps to guide us. With the exception of all the things we caregivers have to do on our daily "to-do list," where each day will takes us is an unknown. Thus, we can choose to live a life of quiet desparation, or we can rise to the challenge of being the best caregiver we can be.

Thanks to this forum, I changed my mindset. That has been life-affirming. What is necessary for George's comfort is what is important to me. Doing for him gives my life purpose.

...and thanks to this forum, I have learned to self-care. At the beginning of this journey, I started losing my sense of self: My modus operanti was "give up and give in." With my new mindset, when I need to have "fun," I take my car through a drive-in carwash. When I want to "relax," I schedule a dental appointment to get my teeth cleaned. When I need to feel sensual, I go out to the garden and let the sun kiss my face and warm my body while I pull weeds.

...and when I need to "connect," I come to you--my new community and family.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

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tsch | @tsch | Jun 1 7:43am

@diverdown1
I would be happy to answer any questions if I can. It sounds like you have many issues that possibly complicate your caring for your mom. In most cases I think my best advice to any caregiver with a challenging situation, is to access outside help and allow yourself time off. In CT there are programs to help people. Maybe there are some where your mom is. If you can keep humor as part of the challenge, it is a good thing. I have not had a person with dementia in my own family, so alot of what I know is from reading and clients. I have always worked for town governments and do not have experience as a private case manager tho.
I think its very hard, but adult children are not necessarily responsible for their parent's needs, and if you have a complicated family history, its even worse. You cannot change your mom, you have to deal with her as she is or not deal.

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tsch | @tsch | Jun 1 7:51am
In reply to @diverdown1 "@tsch I am a semester away from getting my MSW. I will say that my education..." + (show)
Profile picture for diverdown1 @diverdown1

@tsch I am a semester away from getting my MSW. I will say that my education has provided absolutely nothing regarding someone with dementia. Also, I have Long COVID, which I believe I got due to complex trauma over the years. I believe my immune system was compromised due to being in fight/flight for so many years. I am trying so hard to manage my sobriety, life, school and also her finances and be there for her emotionally. I have found ways to redirect her and a find that humor helps. She does hang up on me a lot though and usually if I question anything. This is difficult and I do not want some stranger with her. My brother does live there with her, cooks, cleans, grocery shops, drives her to appointments (when she goes) however he gets so angry. She was always very controlling and our family has quite the dysfunction so although she has this, she still can be shaming and mean. With my 8 years of being sober and learning ways to detach and redirect, I do worry about her and my brother. I am grateful that he is living with her. I am not sure I could do that, but one never knows what can be done until faced with it. I say that you are a social worker. I would love to ask your opinion and some questions as I will graduate in August.

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@diverdown1
I answered you in detail and do not know where it is!

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Moderator
Colleen Young, Connect Director | @colleenyoung | 6 days ago
In reply to @gw1997 "Hi there, I am new to this group. My husband has been diagnosed with moderate white..." + (show)
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Hi there,
I am new to this group.
My husband has been diagnosed with moderate white matter disease. At this time, there are only small changes in him. He has errors with his medication management so I picked that up. He has become lost in restaurants. He gave up managing our portfolio.
I am wondering how you first discovered your husband had dementia. What were the early signs? Thanks so very much.

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@gw1997, I add my welcome to the helpful replies your received from @georgescraftjr and others.

You might also be interested in this related discussion:
- What were the first dementia signs you noticed? https://connect.mayoclinic.org/discussion/what-were-the-first-signs-you-noticed/

@gw1997, is your husband aware of these changes too?

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1 reply
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teacher502 | @teacher502 | 6 days ago

Ahhh..my sweet friend...I love this post, and since it is the first thing I am reading this morning, it is starting my day off with a moment of joy and reflection. It is interesting how our lives change, and we find so much solace in small things. Going to a play seems exhausting but sitting in a dentist chair peaceful. Finding a moment to walk to the mailbox, and, if possible, water the sunflowers on the way back gives purpose and accomplishment versus managing a never ending to do list of legal matters. Yes the coping is hard at times, but the little things that are individual to each of us become precious.
Thank you for such an uplifting post.

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1 reply
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kjc48 | @kjc48 | 6 days ago

@georgescraftjr When I went into Connect this morning, and saw the title of this post, I knew it was you! You have such a poignant way of posting. Thank you for your share. What it calls out for me, is that we need to find joy in what we are "doing." Always looking for ways to preserve our own dignity through the "self care" you describe - to think the simple task of going to a car wash, becomes a metaphor of cleaning our own soul. I choose, as well, to rise to the challenge of being the best caregiver I can be. Thank you, dear Connect friend for such a beautiful post. Best, Karla

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georgescraftjr | @georgescraftjr | 6 days ago
In reply to @kjc48 "@georgescraftjr When I went into Connect this morning, and saw the title of this post, I..." + (show)
Profile picture for kjc48 @kjc48

@georgescraftjr When I went into Connect this morning, and saw the title of this post, I knew it was you! You have such a poignant way of posting. Thank you for your share. What it calls out for me, is that we need to find joy in what we are "doing." Always looking for ways to preserve our own dignity through the "self care" you describe - to think the simple task of going to a car wash, becomes a metaphor of cleaning our own soul. I choose, as well, to rise to the challenge of being the best caregiver I can be. Thank you, dear Connect friend for such a beautiful post. Best, Karla

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@kjc48

Thank YOU--for greeting us with your beautiful smile--and words.

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georgescraftjr | @georgescraftjr | 6 days ago
In reply to @teacher502 "Ahhh..my sweet friend...I love this post, and since it is the first thing I am reading..." + (show)
Profile picture for teacher502 @teacher502

Ahhh..my sweet friend...I love this post, and since it is the first thing I am reading this morning, it is starting my day off with a moment of joy and reflection. It is interesting how our lives change, and we find so much solace in small things. Going to a play seems exhausting but sitting in a dentist chair peaceful. Finding a moment to walk to the mailbox, and, if possible, water the sunflowers on the way back gives purpose and accomplishment versus managing a never ending to do list of legal matters. Yes the coping is hard at times, but the little things that are individual to each of us become precious.
Thank you for such an uplifting post.

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@teacher502

...and thank you for being an inspiration.

You mentioned that your husband was diagnosed in 2018, and that at the time you were nervous about giving him Seroquel. That medication was not a good fit for George, who has depression, anxiety and insomnia.

What is your husband taking now? How is his weight? (George takes Mirtazapine (Remeron), which commonly causes weight gain due to increased appetite and metabolic changes. He also takes Donepezil (Aricept), which can cause weight loss due to gastrointestinal disturbances and appetite suppression. Recently, his doctor prescribed Ativan (Lorezapam), which I give to him on an "as needed" basis--when he has an episode of severe anxiety and I am unable to calm him down.)

...and how are you?

Love,
George's Wife

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gw1997 | @gw1997 | 6 days ago
In reply to @colleenyoung "@gw1997, I add my welcome to the helpful replies your received from @georgescraftjr and others. You..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

@gw1997, I add my welcome to the helpful replies your received from @georgescraftjr and others.

You might also be interested in this related discussion:
- What were the first dementia signs you noticed? https://connect.mayoclinic.org/discussion/what-were-the-first-signs-you-noticed/

@gw1997, is your husband aware of these changes too?

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@colleenyoung
Yes, he is. I think it is probably quite disturbing to him. I know he is grateful he has me for support.

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teacher502 | @teacher502 | 2 days ago
In reply to @georgescraftjr "@teacher502 ...and thank you for being an inspiration. You mentioned that your husband was diagnosed in..." + (show)
Profile picture for georgescraftjr @georgescraftjr

@teacher502

...and thank you for being an inspiration.

You mentioned that your husband was diagnosed in 2018, and that at the time you were nervous about giving him Seroquel. That medication was not a good fit for George, who has depression, anxiety and insomnia.

What is your husband taking now? How is his weight? (George takes Mirtazapine (Remeron), which commonly causes weight gain due to increased appetite and metabolic changes. He also takes Donepezil (Aricept), which can cause weight loss due to gastrointestinal disturbances and appetite suppression. Recently, his doctor prescribed Ativan (Lorezapam), which I give to him on an "as needed" basis--when he has an episode of severe anxiety and I am unable to calm him down.)

...and how are you?

Love,
George's Wife

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@georgescraftjr
My hubby has had back to back UTIs. The first thing to go away was his ability to walk (March 30, 2026) and that has not returned. In desperation I hired a Physical Therapist, and he has helped with massaging the muscles and tendons and with two strong people beside him, he will shuffle his feet and try to move them, but sadly he can't. We now have 24/7 help and I am grateful for the gift of each person who helps us. We tried all of the drugs you mentioned and one by one they each were stopped for one reason or another. Now we use.CBD oil (0.3ml of 3000mg) in the daytime every 3-4 hours. We use trazadone 50mg at bedtime along with one 5mg fast release melatonin. Occasionally we give tylenol when needed. Seroquel was great initially, but when it backfired, it was frightening. I have had it added as an allergy to make sure no one ever gives it to him. I have to go for now, but I am grateful to have connected with you again.

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