1. < Caregivers: Dementia
Mentor

Introductions: Are you caring for someone with dementia?

Posted by Scott, Volunteer Mentor @IndianaScott, Aug 30, 2016

My mother-in-law (MIL) had what was finally determined to be frontal temporal dementia. She had the disease from her 60s until she passed away at 86. My wife was especially involved in her mom's caregiving due to some serious denial in other family members and a GP who refused to diagnose, even when significant deficits were obvious (mistaking the UPS deliveryman for her husband and not knowing the difference between roads and sidewalks). The most unfortunate result of this, to me, was the lost time when my MIL and her family could have been having meaningful and important discussions about significant matters of importance to her and them.

In my wife's years of fighting her brain cancer, she, too, exhibited many of the aspects of mental degradation and physical losses one would affiliate with a dementia patient.

As an aside, for several years I worked for the national Alzheimer's Association raising money for their research programs nationwide.

I wish everyone struggling with this disease and their caregivers and families strength and peace.

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

Debbra Williams, Alumna Mentor | @debbraw | Jan 4, 2019
In reply to @kathymcl "Of course kdo0827. I just ask Alexa to set a reminder. When asked what the reminder..." + (show)
@kathymcl

Of course kdo0827. I just ask Alexa to set a reminder. When asked what the reminder was for I gave it the actual language that my mother would hear e.g. “Rheta, wake up. It’s time to go to breakfast.” It asked me when the reminder should be set for,and I just say ‘every day at 4pm’, or if it’s her reminder that maybe the PSW is coming to help with her shower, then ‘every Tuesday and Friday at whatever o’clock’. Sometimes I will set the reminder time also for the night before a next day appointment “Rheta, just a reminder. Kathy will be here at 10:00am tomorrow morning to take you to your doctor”. Then set the reminder again for the day of- “Rheta, don’t forget Kathy will be here in one hour to take you to the doctor”. She seems to really enjoy the fact that someone is speaking directly to her. I gave it a nightly reminder for 8pm that she really seems to enjoy, “Rheta, I hope you had a good day. Have a good sleep and let’s talk again tomorrow. Goodnight” . Mom likes saying goodnight back because she feels that someone is actually connecting with her, seems less computerized to her. As long as mom says, Alexa, thank you (rather than thank you, Alexa-hi how does not ‘wake Alexa up’), Alexa will respond in some way (thank you, good nite, etc). I am pretty sure you could also do this on a Google system. Hope this helps.

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@kathymcl - Brilliant! I'm going to share this with my stepdaughters who are having a similar issue. What a great solution. And thanks for your kind words. Good luck with the Geriatric Psychiatrist. I agree with you. The diagnosis is key. Once we had my husband's evaluation and assessment, I was much more able to accept this results and look for a way forward. Wishing you the best.

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Debbra Williams, Alumna Mentor | @debbraw | Jan 4, 2019
In reply to @kdo0827 "Thanks for your reply. My Mom has been an angry person for as long as I..." + (show)
@kdo0827

Thanks for your reply. My Mom has been an angry person for as long as I can remember. It’s like an undercurrent. Now she gets very angry anytime I have to tell her no. Such as no driving especially. I know it’s a hard thing for anyone. As she forgets she can’t drive this battle goes on a lot. She is quite difficult to handle. Add that to my depression and I’m just very unhappy.

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@kdo0827 - you can't help it. Don't beat yourself up. There are times I am so angry at my husband that I go in the bathroom, turn the water on and just shake my fists and cry. There are times that he seems so forlorn that I just hate myself for any harsh word I've spoken. Please remember to take care of you. Is there any way you could carve out some time to do something that would truly make you happy? Maybe a lunch with friends? A whole quiet afternoon to read a book? I don't know about you, but I really need some me-time to recharge. Hoping things get better for you!

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2 replies
Mentor
Scott, Volunteer Mentor | @IndianaScott | Jan 5, 2019
In reply to @kdo0827 "Thanks for your reply. My Mom has been an angry person for as long as I..." + (show)
@kdo0827

Thanks for your reply. My Mom has been an angry person for as long as I can remember. It’s like an undercurrent. Now she gets very angry anytime I have to tell her no. Such as no driving especially. I know it’s a hard thing for anyone. As she forgets she can’t drive this battle goes on a lot. She is quite difficult to handle. Add that to my depression and I’m just very unhappy.

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Good morning @kdo0827 I am sorry to read you are battling depression too. I know I cannot speak for anyone but myself, however I will venture to say many caregivers battle depression too. I know I did and continue to fight it. It is overwhelming, demanding, and isolating. A tough combo to manage -- especially when you add the critical demands of a patient.

Not that it helps, but our children and I found some help in the words of my wife's neuro-oncologist. He said that with a compromised brain more often than not the patient exhibits their prior traits in highly exaggerated or magnified forms. I know when he said this we realized the traits we were struggling with from my wife were not 'new', but how she had been times 1,000! At least it was an explanation, which did help us a bit with coping.

There were many days, weeks, and months when I'd have paid a king's ransom to hear a kind word from my wife about my caregiving efforts. Then I'd remind myself she was a mixture of deathly afraid, sick, and uncomfortable, which all led to being crabby. Plus in her case the damage in her brain had destroyed her ability to filter and feel empathy.

It is a tough row to hoe for sure!

Strength, courage, and peace!

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1 reply
Mentor
Scott, Volunteer Mentor | @IndianaScott | Jan 5, 2019

One more thought I had @kathymcl and @kdo0827

Please remember one of my favorite lines about caregiving: "Superman and Wonder Woman only exist in the comics." Caregivers are individuals and as such can only do what they, individually can. Once we do our best all we can do is move on to our next caregiving task.

I went so far as to buy the light you see in the photo just to remind me when times got extra tough. Sorry in advance if it's not right side up -- I can never figure out why that happens here 🙂

Strength, courage, and peace!
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1 reply
kathymcl | @kathymcl | Jan 5, 2019
In reply to @IndianaScott "One more thought I had @kathymcl and @kdo0827 Please remember one of my favorite lines about..." + (show)
@IndianaScott

One more thought I had @kathymcl and @kdo0827

Please remember one of my favorite lines about caregiving: "Superman and Wonder Woman only exist in the comics." Caregivers are individuals and as such can only do what they, individually can. Once we do our best all we can do is move on to our next caregiving task.

I went so far as to buy the light you see in the photo just to remind me when times got extra tough. Sorry in advance if it's not right side up -- I can never figure out why that happens here 🙂

Strength, courage, and peace!

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@IndianaScott Never seen that before. That’s a good idea. It is the right way up (on my screen anyway) LOL. I do agree. We can only do what we can do. And if we don’t care of ourselves first, there might have no one to take care of them. So we need to be at least an equal priority.

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kdo0827 | @kdo0827 | Jan 5, 2019
In reply to @IndianaScott "Good morning @kdo0827 I am sorry to read you are battling depression too. I know I..." + (show)
@IndianaScott

Good morning @kdo0827 I am sorry to read you are battling depression too. I know I cannot speak for anyone but myself, however I will venture to say many caregivers battle depression too. I know I did and continue to fight it. It is overwhelming, demanding, and isolating. A tough combo to manage -- especially when you add the critical demands of a patient.

Not that it helps, but our children and I found some help in the words of my wife's neuro-oncologist. He said that with a compromised brain more often than not the patient exhibits their prior traits in highly exaggerated or magnified forms. I know when he said this we realized the traits we were struggling with from my wife were not 'new', but how she had been times 1,000! At least it was an explanation, which did help us a bit with coping.

There were many days, weeks, and months when I'd have paid a king's ransom to hear a kind word from my wife about my caregiving efforts. Then I'd remind myself she was a mixture of deathly afraid, sick, and uncomfortable, which all led to being crabby. Plus in her case the damage in her brain had destroyed her ability to filter and feel empathy.

It is a tough row to hoe for sure!

Strength, courage, and peace!

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Thanks for sharing this with me. What your wife’s doctor said makes perfect sense to me. As I’ve shared before my mom has always had an angry undercurrent. I remember very few times I saw her actually enjoy life. I’ve taken her to therapy which she wouldn’t continue and she’s on depression meds. She was verbally and physically abuse to me as a child. She has an appointment next week and I’m going to talk to her doctor about either changing her meds or upping her dosage. Thank you again!!

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dianajane | @dianajane | Jan 5, 2019
In reply to @debbraw "@kdo0827 - you can't help it. Don't beat yourself up. There are times I am so..." + (show)
@debbraw

@kdo0827 - you can't help it. Don't beat yourself up. There are times I am so angry at my husband that I go in the bathroom, turn the water on and just shake my fists and cry. There are times that he seems so forlorn that I just hate myself for any harsh word I've spoken. Please remember to take care of you. Is there any way you could carve out some time to do something that would truly make you happy? Maybe a lunch with friends? A whole quiet afternoon to read a book? I don't know about you, but I really need some me-time to recharge. Hoping things get better for you!

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@debbraw

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dianajane | @dianajane | Jan 5, 2019

@debbraw whoops my error...I have been exactly as you described. Anger is something new. I love my husb so much that I am fore ver mad at myself for my shortcomings. I see him suffering, not being able to talk and the Alzheimer's disease is progressing rapidly. He was diagnosed in July of 2015, so early in the game now. However, I am making arrangements for nursing home care. We have hospice at home but I am unable to continue. Very difficult decision. Breaks my heart.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 5, 2019
In reply to @kdo0827 "@colleenyoung I’d like to join this group. I take care of my mom who suffers with..." + (show)
@kdo0827

@colleenyoung I’d like to join this group. I take care of my mom who suffers with dementia. It’s a hard battle for me as she’s angry most of the time. I could use some pointers for myself so that I don’t get aggravated with having to repeat things multiple times. I don’t let her see it but it happens.

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@kdo0827 @kathymcl, I'd like to add my welcome and am glad you've joined the Caregivers group. In addition to the help you've already received from fellow caregiving travelers, I'd like to offer a list of additional discussions you may wish to explore and add to:

- Dementia Anger Issues - bathing https://connect.mayoclinic.org/discussion/dementia-anger-issues-bathing/
- Alzheimer's and Incontinence https://connect.mayoclinic.org/discussion/alzheimers-and-incontinence/
- To paraphrase Lady Macbeth: "Out, out damn guilt!" https://connect.mayoclinic.org/discussion/to-paraphrase-lady-macbeth-out-out-damn-guilt/
- Caregiving and Reality https://connect.mayoclinic.org/discussion/caregiving-and-reality/
- Ambiguous Loss https://connect.mayoclinic.org/discussion/ambiguous-loss/
- Alzheimer's and DNR https://connect.mayoclinic.org/discussion/alzheimers-and-dnr/
- Sweating at night https://connect.mayoclinic.org/discussion/sweating-at-night/
- Dealing with anxiety/guilt over spouse in LTC with Dementia https://connect.mayoclinic.org/discussion/dealing-with-anxiety-guilt-over-spouse-in-ltc-with-dementia/
- Phone Scam Worries https://connect.mayoclinic.org/discussion/phone-scam-worries/
- When the Caregiver Needs Care https://connect.mayoclinic.org/discussion/when-the-caregiver-needs-care/
- Activities when abilities are limited? https://connect.mayoclinic.org/discussion/activities/
- Call Button Type Devices https://connect.mayoclinic.org/discussion/call-button-type-devices/
- Always calling out for help while in bed https://connect.mayoclinic.org/discussion/always-calling-out-for-help-while-in-bed/
- Dealing with dementia and sleep apnea machine https://connect.mayoclinic.org/discussion/dealing-with-dementia/
- Outside help https://connect.mayoclinic.org/discussion/outside-help/
- Memory care https://connect.mayoclinic.org/discussion/memory-care-1/

The list is ridiculously long, but I thought it might be helpful see all the dementia discussions in one place. You can bookmark this message by clicking the bookmark symbol beside the heart below the message. You can find your bookmarked messages in your profile for future reference. You never know when you might want to refer back to one of these discussions or post a new question as you encounter a new situation and learn from someone who has been there.

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2 replies
kdo0827 | @kdo0827 | Jan 5, 2019
In reply to @colleenyoung "@kdo0827 @kathymcl, I'd like to add my welcome and am glad you've joined the Caregivers group...." + (show)
@colleenyoung

@kdo0827 @kathymcl, I'd like to add my welcome and am glad you've joined the Caregivers group. In addition to the help you've already received from fellow caregiving travelers, I'd like to offer a list of additional discussions you may wish to explore and add to:

- Dementia Anger Issues - bathing https://connect.mayoclinic.org/discussion/dementia-anger-issues-bathing/
- Alzheimer's and Incontinence https://connect.mayoclinic.org/discussion/alzheimers-and-incontinence/
- To paraphrase Lady Macbeth: "Out, out damn guilt!" https://connect.mayoclinic.org/discussion/to-paraphrase-lady-macbeth-out-out-damn-guilt/
- Caregiving and Reality https://connect.mayoclinic.org/discussion/caregiving-and-reality/
- Ambiguous Loss https://connect.mayoclinic.org/discussion/ambiguous-loss/
- Alzheimer's and DNR https://connect.mayoclinic.org/discussion/alzheimers-and-dnr/
- Sweating at night https://connect.mayoclinic.org/discussion/sweating-at-night/
- Dealing with anxiety/guilt over spouse in LTC with Dementia https://connect.mayoclinic.org/discussion/dealing-with-anxiety-guilt-over-spouse-in-ltc-with-dementia/
- Phone Scam Worries https://connect.mayoclinic.org/discussion/phone-scam-worries/
- When the Caregiver Needs Care https://connect.mayoclinic.org/discussion/when-the-caregiver-needs-care/
- Activities when abilities are limited? https://connect.mayoclinic.org/discussion/activities/
- Call Button Type Devices https://connect.mayoclinic.org/discussion/call-button-type-devices/
- Always calling out for help while in bed https://connect.mayoclinic.org/discussion/always-calling-out-for-help-while-in-bed/
- Dealing with dementia and sleep apnea machine https://connect.mayoclinic.org/discussion/dealing-with-dementia/
- Outside help https://connect.mayoclinic.org/discussion/outside-help/
- Memory care https://connect.mayoclinic.org/discussion/memory-care-1/

The list is ridiculously long, but I thought it might be helpful see all the dementia discussions in one place. You can bookmark this message by clicking the bookmark symbol beside the heart below the message. You can find your bookmarked messages in your profile for future reference. You never know when you might want to refer back to one of these discussions or post a new question as you encounter a new situation and learn from someone who has been there.

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WOW!! Thank you so much! There are many I’m going to read.

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