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

@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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Thank you. It really helps to know I’m not alone. I do need to find something for me instead of doing for everyone else.

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@dianajane

@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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@dianajane My heart is breaking with yours. How hard this must be for you to arranging nursing home care. Is it near you? Will you be able to help manage his care there? I am wishing you strength and courage. This must be heart wrenching.

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@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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Oh my gosh! How valuable is this list! Thank you so much.

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@debbraw

@dianajane My heart is breaking with yours. How hard this must be for you to arranging nursing home care. Is it near you? Will you be able to help manage his care there? I am wishing you strength and courage. This must be heart wrenching.

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@debbraw Thank you. yes it is close to home. I will be able to visit 24 7, seems like a great place for his care. Safe, excellent staff, still Hospice will be visiting him and monitoring his health, etc. Will be an adjustment for both of us.

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Hello. I am new to Mayo Clinic Connect and was thankful to find this group. I am the oldest daughter of my siblings who are all younger and I am the go to person for both of my parent's who are both in their 80's. Although they still live quit independently, their ongoing health issues and needs has made me realize I have moved into the next stage of my life to help them cope. About two years ago I started telling my siblings that something was wrong with dad's short term memory because he kept asking the same questions and he was getting short tempered at times. They don't spend as much time with my parent's as I do, so they didn't believe me at first. Then I voiced my concern to my mom and after some dialogue discovered she had noticed this starting to happen more and more before that and consciously or subconsciously started to do things so others wouldn't notice it as much, like answer questions directed at him herself, etc. When talking with dad about it, he refuses to be tested or see a doctor to find out what is going on, but he has started to acknowledge that it is happening but we have no idea what stage he is currently in. I'm hoping to learn more about caregiving a parent with dementia by being a part of this group and to find educational resources for both myself and mom since other family and friends are noticing now that it is more pronounced and she can't cover for him any longer.

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Welcome aboard. I care for my older sister at our home. It works well for now and my husband is very supportive. My sister listens and does whatever he suggests. Me? Not so much but at least she is here and safe, eats whatever I cook and sleeps like a rock. You will figure out ways to make things easier. Siblings are hard to convince and I can’t count on mine either. There are lots of us on this discussion so ask your questions or solutions or rant any rave. We will understand.

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@daughter1

Hello. I am new to Mayo Clinic Connect and was thankful to find this group. I am the oldest daughter of my siblings who are all younger and I am the go to person for both of my parent's who are both in their 80's. Although they still live quit independently, their ongoing health issues and needs has made me realize I have moved into the next stage of my life to help them cope. About two years ago I started telling my siblings that something was wrong with dad's short term memory because he kept asking the same questions and he was getting short tempered at times. They don't spend as much time with my parent's as I do, so they didn't believe me at first. Then I voiced my concern to my mom and after some dialogue discovered she had noticed this starting to happen more and more before that and consciously or subconsciously started to do things so others wouldn't notice it as much, like answer questions directed at him herself, etc. When talking with dad about it, he refuses to be tested or see a doctor to find out what is going on, but he has started to acknowledge that it is happening but we have no idea what stage he is currently in. I'm hoping to learn more about caregiving a parent with dementia by being a part of this group and to find educational resources for both myself and mom since other family and friends are noticing now that it is more pronounced and she can't cover for him any longer.

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Hello @daughter1 I am sorry to read of your new caregiving journey and your folks, especially your dad's healthcare troubles, it is great to have you here at Mayo Connect! This caregiving group is a great one and have a wealth of information to share based on their experiences. Plus we all love to share our hints and tips to make the caregiving job a bit more understandable and almost manageable.

My MIL had dimentia and your post rang many bells in my memory regarding that. First, the denial was huge in her family and her husband frequently covered for her until her actions began to spill over into the town they lived in. Other than my wife, all the siblings refused to believe anything was wrong. The worst outcome of this was so much time was lost when communications, questions, decisions, etc. could have been made with some input from their mother, but they missed that. It made things tougher down the line for sure. My wife fought brain cancer for over 14 years and while I was her caregiver she made sure we had the tough conversations necessary, but which made for a much smoother time for our adult children when she passed away than was had by her siblings when her mom died.

I would suggest you try and get some of those hard discussions underway and from experience again I suggest you might want to get HIPPA authorization so you can discuss your father's condition firsthand with his medical team. Again, this was a huge help down the line.

I don't know where you are located, but some of the state chapters of the national Alzheimer's Association have some excellent resources and also (http://www.alz.org) online.

What do you see now as your biggest challenges in your caregiving?

Stength, courage, and peace!

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@daughter1

Hello. I am new to Mayo Clinic Connect and was thankful to find this group. I am the oldest daughter of my siblings who are all younger and I am the go to person for both of my parent's who are both in their 80's. Although they still live quit independently, their ongoing health issues and needs has made me realize I have moved into the next stage of my life to help them cope. About two years ago I started telling my siblings that something was wrong with dad's short term memory because he kept asking the same questions and he was getting short tempered at times. They don't spend as much time with my parent's as I do, so they didn't believe me at first. Then I voiced my concern to my mom and after some dialogue discovered she had noticed this starting to happen more and more before that and consciously or subconsciously started to do things so others wouldn't notice it as much, like answer questions directed at him herself, etc. When talking with dad about it, he refuses to be tested or see a doctor to find out what is going on, but he has started to acknowledge that it is happening but we have no idea what stage he is currently in. I'm hoping to learn more about caregiving a parent with dementia by being a part of this group and to find educational resources for both myself and mom since other family and friends are noticing now that it is more pronounced and she can't cover for him any longer.

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Hi @daughter1 – So glad you came to Connect! Welcome. You will find that there are lots of people here dealing with situations similar to yours. I know this must be a scary time for you. My husband was diagnosed with Mild Cognitive Impairment (MCI) in 2015. Same as you, I started noticing little changes that I couldn't ignore. I was at a loss. You just can't go up to a grown person and say "I think something is wrong with your mind. How about we see a doctor?" I ended up just breaking down crying at the doctors office when I got a very bad cold and went in for treatment. I told the doctor what was going on with my husband, and she said she would talk to him when we came in for his annual checkup. Like your dad, my husband already recognized some of the changes so when the doctor talked to him about it, he agreed to go have an assessment. That's how he got diagnosed with MCI.

Mayo has a program called Healthy Action to Benefit Independence & Thinking (HABIT) that was established to help people dealing with cognitive issues. If you are eligible, they run 10 day programs where both the patient and the partner attend to learn techniques for dealing with the cognitive decline. The program was a real god-send for me and my husband. We go to Mayo Jax and there are several people who come with adult children as their partners. And there is one man who comes with his wife and daughter.

Here is the Connect Page dealing with the program:
https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/newsfeed/what-is-habit-healthy-action-to-benefit-independence-thinking/

Getting a diagnosis is the first step so if there is any way you can manage to have that assessment, it will be easier for you and your dad.
Are you having problems with particular issues with your dad? From what I've learned in dealing with my husband and other caretaking situations some of the top issues tend to be driving, finances, and surprisingly, sometimes hygiene. Don't know if you are having any of those. Wishing you and your family all the best.

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@kmkm

Hello- I don’t get out much and am looking for an online community of caregivers who are at home full-time caring for a parent with Alzheimers. I’d love to swap suggestions and ideas. Is there anyone out there? Thanks.

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Hello, I am also in the position of caring for my husband who has dementia or Alzheimer's and look to this forum to find answers and advise to the many challenges I get on a daily basis. It feels like I am not alone when I read about others experiences. I am not familiar how this works but want to be able to communicate with others like me. I am not computer savvy but am willing to try.

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@IndianaScott

Hi @virginiatc and @mbabkk I would be interested in the steps you refer to as well, mbabkk. I am not familiar with this idea and would like to learn about it.

Strength, courage, and peace to all caregivers!

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Hi Scott, I love your posts and am just now trying to learn how to navigate this forum which to others is probably very basic. Nothing about this is basic to me. Forgive me for not using it correctly.

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@virginiatc

Hi Scott, I love your posts and am just now trying to learn how to navigate this forum which to others is probably very basic. Nothing about this is basic to me. Forgive me for not using it correctly.

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Hi @virginiatc – Welcome to the Connect community! I think you are doing a great job at navigating the forum, but if you have any questions or find something you are struggling with, shout out and one of us can help you. I'm sorry to hear about your husband's dementia. My husband was diagnosed with Mild Cognitive Impairment in 2015 and it has progressed into dementia now so I have some understanding of what it means to be a caregiver in this situation. Can you tell more about your husband's situation? When was he diagnosed? What would you say are the biggest challenges you are facing now?

Also, just FYI, there's a page you may be interested in checking out where there is more information on some aspects of cognitive impairment:
https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/

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@virginiatc

Hi Scott, I love your posts and am just now trying to learn how to navigate this forum which to others is probably very basic. Nothing about this is basic to me. Forgive me for not using it correctly.

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Hi @virginiatc Welcome to Mayo Connect and congratulations! You got it all correct! You are here and doing it right (you really can't break anything here)! While I am sorry to read of your husband's healthcare journey, I am pleased to e-meet you and am happy you found Mayo Connect!

I found this site when I was taking care of my wife and I was feeling overwhelmed, isolated, and exhausted. The Connect community helped me overcome all three of those and I hope it does the same for you! This is a wonderful group of caregivers and concerned folks who are a wealth of information, hints, tips, and support!

If you are like me, nothing about computers is 'basic', but rather more like magic so I fumble with it often myself.

I don't want to pry, but how long have you been caregiving now and what are your biggest challenges?

Strength, courage, and peace!

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@IndianaScott

Hi @virginiatc Welcome to Mayo Connect and congratulations! You got it all correct! You are here and doing it right (you really can't break anything here)! While I am sorry to read of your husband's healthcare journey, I am pleased to e-meet you and am happy you found Mayo Connect!

I found this site when I was taking care of my wife and I was feeling overwhelmed, isolated, and exhausted. The Connect community helped me overcome all three of those and I hope it does the same for you! This is a wonderful group of caregivers and concerned folks who are a wealth of information, hints, tips, and support!

If you are like me, nothing about computers is 'basic', but rather more like magic so I fumble with it often myself.

I don't want to pry, but how long have you been caregiving now and what are your biggest challenges?

Strength, courage, and peace!

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My caregiving life began with taking in my mother 19 years ago and keeping her with me until her death 5 yrs later at age 99. That was my training, and above all it was my way of helping to make her final years better than they would have been. She was my hero and I felt I owed her plenty. Than a few years later my husband started doing things out of character and with some help from our dr. we came to the conclusion he was dealing with dementia symptoms. No in depth testing was ordered or done. He has become more and more dependent on me, unable to drive happened 8 years ago. All of his participating activities ended, like golfing, running, etc. Now he needs help with everything, all his A.D.L. need assistance from me. It is just he and me. And I was very able until my spinal health started to require therapy and more therapy. After 2 MRI's, and more physical therapy I was diagnosed with degenerative disc disease with severe stenosis in the Lumbar spine which I am now getting injections for pain. Tomorrow will be my 3rd injection. May have to go to a plan B which will probably be surgery. I am 77 and in otherwise good health. As long as I can keep on my feet and be able to move without pain, I think I can take care of my husband. My challenges now are getting rid of the constant pain that is effecting my everyday life, and of course staying optimistic as we go thru each day together. My husband is aware he is not his old self, he seems powerless to help in any way. One thing I am so thankful for, he is not a mean person and if I take him by the hand and ask him to go with me to the bathroom to take his shower, he will. He initiates nothing and does not remember things that happened yesterday. We take one day at a time. That is the only way I have survived, I believe. My love for this man keeps me going. And now, this site, with your posts will help alleviate the lonesome feeling. Thank you.

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@debbraw

Hi @virginiatc – Welcome to the Connect community! I think you are doing a great job at navigating the forum, but if you have any questions or find something you are struggling with, shout out and one of us can help you. I'm sorry to hear about your husband's dementia. My husband was diagnosed with Mild Cognitive Impairment in 2015 and it has progressed into dementia now so I have some understanding of what it means to be a caregiver in this situation. Can you tell more about your husband's situation? When was he diagnosed? What would you say are the biggest challenges you are facing now?

Also, just FYI, there's a page you may be interested in checking out where there is more information on some aspects of cognitive impairment:
https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/

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Thank you for the welcome. I hope you can read what I wrote to IndianaScott as it answers your questions, I hope. Thank you for the page information link.

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@virginiatc

My caregiving life began with taking in my mother 19 years ago and keeping her with me until her death 5 yrs later at age 99. That was my training, and above all it was my way of helping to make her final years better than they would have been. She was my hero and I felt I owed her plenty. Than a few years later my husband started doing things out of character and with some help from our dr. we came to the conclusion he was dealing with dementia symptoms. No in depth testing was ordered or done. He has become more and more dependent on me, unable to drive happened 8 years ago. All of his participating activities ended, like golfing, running, etc. Now he needs help with everything, all his A.D.L. need assistance from me. It is just he and me. And I was very able until my spinal health started to require therapy and more therapy. After 2 MRI's, and more physical therapy I was diagnosed with degenerative disc disease with severe stenosis in the Lumbar spine which I am now getting injections for pain. Tomorrow will be my 3rd injection. May have to go to a plan B which will probably be surgery. I am 77 and in otherwise good health. As long as I can keep on my feet and be able to move without pain, I think I can take care of my husband. My challenges now are getting rid of the constant pain that is effecting my everyday life, and of course staying optimistic as we go thru each day together. My husband is aware he is not his old self, he seems powerless to help in any way. One thing I am so thankful for, he is not a mean person and if I take him by the hand and ask him to go with me to the bathroom to take his shower, he will. He initiates nothing and does not remember things that happened yesterday. We take one day at a time. That is the only way I have survived, I believe. My love for this man keeps me going. And now, this site, with your posts will help alleviate the lonesome feeling. Thank you.

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Thank you, @virginiatc for the background. I agree so very much with your statement that love keeps you going. It was all that allowed me to be my wife's caregiver for her 14+ years.

I can also understand your concern about your back. After the first four years of caregiving I had to have a spinal fusion and during the final years injured my left knee and developed carpel tunnel in both hands from repetitive lifting. It is good to hear you are seeing a doctor to take care of your back! I hear those shots can be a huge help!

Caregivers are truly amazing people! We get thrown into the breech and do amazing things for those we love! You are to be congratulated on all you did for your Mom and all you are doing for your husband.

It is so challenging when our loved ones can't help even though we know they want to and wish they could!

Again, I am really glad you have found Mayo Connect!

Looking forward to hearing from you again whenever you want to visit.

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