Caring for someone with dementia / Alzheimer's

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

Thanks for the great idea, @colleenyoung. I think a specific group and discussion is warranted given the challenges dementia can present to caregivers.

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.

@debbraw

Hi @kdo0827 and @kathymcl – I'm going to echo what @IndianaScott said – it takes all the love and patience you have and sometimes even that is not enough to keep you from seriously considering a name change! (LOL… Scott you made me laugh.) It is sometimes just heartbreaking to have to face the losses – like not knowing how to get phone messages, not remembering the way to the mall, etc. My husband was an engineer and seriously, at this point, I'm the one who has to figure out how to change the bulb in the refrigerator when it burns out! But for what its worth, someone once told me that no matter how much a person forgets – words, directions, faces, names – they always remember what it feels like to feel loved. I try to keep that in mind and act in a loving way whenever it's possible. Not that I hit that goal consistently, but I try. For me, sometimes a touch is easier and more effective than words – just a pat on the back, a squeeze of the hand, a shoulder rub… @kdo0827 – Is there anything particular your mom seems to focus her anger on? Or is it general? Sometimes, if I can identify the stimulus, I can either remove it or redirect my husband… Best wishes to both of you!

Jump to this post

Hi @debbraw Thank you for the reminder that I don’t have to have the answer all the time and that even a touch is important. I wouldn’t want mom thinking I don’t want to be there tho she has mentioned feeling like she is taking up too much time. I always reassure her and tell her that I am not complaining about that. I do get exasperated by the repetitive questions and of course, feel badly about that. She now has a referral to a Geriatric Psychiatrist in April which will help at least in a more detailed diagnosis and also give her some follow-up.

REPLY
@kathymcl

@IndianaScott thanks for your note back. Up until now, my only way to recharge was to come home from her senior’s residence and sit like a lump on the couch and have some quiet time. I used to do that in my final years of working after a tough day. He’d see my face coming in the door after work and tell me to go sit on the couch and he would take care of dinner. I retired 2 years ago at 67. Now I wonder how I would have managed the mom issue had I still been working. I don’t drive and am low-vision as a result of glaucoma. At that time, my mom lived in a senior’s residence a bus, 2 subways and a GO train away from me and it could take close to 2 hours to get to her. But we were able to find a place at the end of May, only a 23 min bus ride away from us so that is quite helpful, especially since I am there 3-4 days a week. She goes downstairs for meals but was having trouble remembering when to do that so we got her an ‘Alexa’ and set reminders for 1. Go to the nurses office now and get your medication, 2. Time to have your 1st (2nd,3rd,4th,5th) glass of water (as when she is dehydrated which is frequently, her thinking process seems to worsen), 3. go downstairs for your breakfast/lunch/dinner, 4. Goodnight, Rheta. I hope you had a good day. Sleep well – these types of things. And various other reminders to help keep her on track. Of course, she tries to have an actual conversation with Alexa which doesn’t work out too well but generally, she seems to get the hang of it. My husband insists that we take her out to lunch every 2nd Sunday so she gets to see him too which is great. These are some of the things we have put into place to help.

Jump to this post

Hi @kathymcl Nice to hear back from you! I LOVE your use of Alexa for this purpose! Genius for sure! Wish I'd have had that technology when we needed it!

That was some trek you made and I am not surprised at all it exhausted you! Nice to have found such a closer spot and that your husband joins in on those Sunday suppers! You are right — "great" is the word!

You bring up a very important aspect of caregiving — and that is the near impossible ability of caregiving and holding a fulltime job! For the first few years of my wife' war I was employed fulltime with a remote office in my home. While I had to travel sometimes at least when I was 'in the office' I was home for her. Then I got a new boss. A combination of a new, young manager who wanted 'her own team' and being told I wasn't enough of a team player since my 'allegiance was split between my job and my wife' resulted in her firing me. Coupled with my wife's condition and needs, it was a devastating time in my life for sure In the end we managed by being frugal, the ACA, robbing Peter to pay Paul, and selling a heck of a lot of our stuff to make ends meet. This was the time that led me to Mayo Connect since I was so isolated and irritated in that all I was reading about caregiving at the time was what I call 'feel good' caregiving stories about folks whose employers gave them paid time off, flexible schedules, continued health insurance, or were uber-wealthy celebrities. I wanted to find a place that talked about what caregiving was like for the vast majority of regular folks.

How did you manage your caregiving demands before you retired? It must have been hard!

Strength, courage, and peace!.

REPLY
@kathymcl

@IndianaScott thanks for your note back. Up until now, my only way to recharge was to come home from her senior’s residence and sit like a lump on the couch and have some quiet time. I used to do that in my final years of working after a tough day. He’d see my face coming in the door after work and tell me to go sit on the couch and he would take care of dinner. I retired 2 years ago at 67. Now I wonder how I would have managed the mom issue had I still been working. I don’t drive and am low-vision as a result of glaucoma. At that time, my mom lived in a senior’s residence a bus, 2 subways and a GO train away from me and it could take close to 2 hours to get to her. But we were able to find a place at the end of May, only a 23 min bus ride away from us so that is quite helpful, especially since I am there 3-4 days a week. She goes downstairs for meals but was having trouble remembering when to do that so we got her an ‘Alexa’ and set reminders for 1. Go to the nurses office now and get your medication, 2. Time to have your 1st (2nd,3rd,4th,5th) glass of water (as when she is dehydrated which is frequently, her thinking process seems to worsen), 3. go downstairs for your breakfast/lunch/dinner, 4. Goodnight, Rheta. I hope you had a good day. Sleep well – these types of things. And various other reminders to help keep her on track. Of course, she tries to have an actual conversation with Alexa which doesn’t work out too well but generally, she seems to get the hang of it. My husband insists that we take her out to lunch every 2nd Sunday so she gets to see him too which is great. These are some of the things we have put into place to help.

Jump to this post

The Alexa idea is perfect! I don’t know how to set reminders as you’ve done. Can you share how?

REPLY

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.

REPLY
@debbraw

Hi @kdo0827 and @kathymcl – I'm going to echo what @IndianaScott said – it takes all the love and patience you have and sometimes even that is not enough to keep you from seriously considering a name change! (LOL… Scott you made me laugh.) It is sometimes just heartbreaking to have to face the losses – like not knowing how to get phone messages, not remembering the way to the mall, etc. My husband was an engineer and seriously, at this point, I'm the one who has to figure out how to change the bulb in the refrigerator when it burns out! But for what its worth, someone once told me that no matter how much a person forgets – words, directions, faces, names – they always remember what it feels like to feel loved. I try to keep that in mind and act in a loving way whenever it's possible. Not that I hit that goal consistently, but I try. For me, sometimes a touch is easier and more effective than words – just a pat on the back, a squeeze of the hand, a shoulder rub… @kdo0827 – Is there anything particular your mom seems to focus her anger on? Or is it general? Sometimes, if I can identify the stimulus, I can either remove it or redirect my husband… Best wishes to both of you!

Jump to this post

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.

REPLY
@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.

Jump to this post

@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.

REPLY
@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.

Jump to this post

@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!

REPLY
@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.

Jump to this post

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!

REPLY

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!

NoRegretsLight

REPLY
@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!

Jump to this post

@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.

REPLY
@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!

Jump to this post

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!!

REPLY
@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!

Jump to this post

REPLY

@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.

REPLY
@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.

Jump to this post

@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.

REPLY
@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.

Jump to this post

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

REPLY
Please login or register to post a reply.