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.

@IndianaScott

Hello @greff I am sorry to read of your wife's diagnosis and your path as a caregiver. My MIL had early onset dementia and my wife fought many dementia-like symptoms during her 14+ year war with brain cancer.

I know every patient, the disease, and their fight through it is unique so I offer only a couple of lessons I learned during my years of caregiving. As a counselor none of these are probably new, but just in case.

First, I saw my wife's family lose (or waste) many opportunities to settle matters early in my MIL's disease progression. Then all of a sudden that window closed and they were left to wonder 'what would Mom want?' or 'what would Mom have wanted us to decide here'. It was unfortunate for everyone involved for sure.

My wife and I used this lesson well and she and I had many extremely difficult, but just as necessary, discussions on significant issues immediately upon her diagnosis. Many were mundane legal/estate issues, but included financial and medical POAs, advance medical directives, appropriate HIPPA approvals for sharing medical information, living wills, etc.

After those we then moved on to the far more personal issues as she made decisions on her final wishes, giving certain personal items to family and friends, made plans to make some amends, and more. As tough and at times uncomfortable these discussions were, they paid huge dividends by bringing my wife a tiny bit of peace of mind, helped me be a better guide for her on her path, and turned out to be extremely helpful to our adult children who were able to totally avoid those 'what would Mom have wanted' questions.

I wish you strength, courage, and peace

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Thanks Scott for your insight and encouragement. I have the POA's set up, wills written for both her and I, and my children assigned as executors of the estate. I still have to get some other stuff done but we're making progress I think. Your right about the kids. Mine don't like those discussions but I still have to include them so that they are able to take over in case something happens to me. I'm not in the best of health either. All of the banking, medical, and other financial entities that we work with have POA's on file. Man that makes a huge difference. Without them it is impossible to get things done. I learned this lessen when I was my brother's caregiver when he was dying from lung cancer. I'm thankful that we signed medical POA's given me the decision making rights to care for him. I have and am still learning about taking care of all that stuff ahead of time instead of waiting until it's too late. There is alot to do for sure.

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@IndianaScott

Hello @greff I am sorry to read of your wife's diagnosis and your path as a caregiver. My MIL had early onset dementia and my wife fought many dementia-like symptoms during her 14+ year war with brain cancer.

I know every patient, the disease, and their fight through it is unique so I offer only a couple of lessons I learned during my years of caregiving. As a counselor none of these are probably new, but just in case.

First, I saw my wife's family lose (or waste) many opportunities to settle matters early in my MIL's disease progression. Then all of a sudden that window closed and they were left to wonder 'what would Mom want?' or 'what would Mom have wanted us to decide here'. It was unfortunate for everyone involved for sure.

My wife and I used this lesson well and she and I had many extremely difficult, but just as necessary, discussions on significant issues immediately upon her diagnosis. Many were mundane legal/estate issues, but included financial and medical POAs, advance medical directives, appropriate HIPPA approvals for sharing medical information, living wills, etc.

After those we then moved on to the far more personal issues as she made decisions on her final wishes, giving certain personal items to family and friends, made plans to make some amends, and more. As tough and at times uncomfortable these discussions were, they paid huge dividends by bringing my wife a tiny bit of peace of mind, helped me be a better guide for her on her path, and turned out to be extremely helpful to our adult children who were able to totally avoid those 'what would Mom have wanted' questions.

I wish you strength, courage, and peace

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May God comfort you and your family Scott.

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Just an addition to Scott's wise words. Those of us beginning this journey have a hard road ahead. My husband and I made sure our wills were updated, and we had the health and financial forms signed and notarized, and the funeral arrangements all taken care of about 4 years ago while he was able to help make those decisions and sign his hame. I'm so glad we did, as it made the transition so much easier when I had to make all the decisions with Medicaid and Veterans pension 6 months later when we had to admit him to a care center.
He died a week ago, February 8, and we will have memorial services tomorrow so this past week has been a little hectic, but could have been so much worse. We just had to visit with funeral home to make final preparations, but the financial matters were all taken care of. Still plenty to do, but time to take care of that the next few weeks.
It is hard but I know he is in a better place. He had very little quality of health in the past year, and slept most of the time.

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@rmftucker

Just an addition to Scott's wise words. Those of us beginning this journey have a hard road ahead. My husband and I made sure our wills were updated, and we had the health and financial forms signed and notarized, and the funeral arrangements all taken care of about 4 years ago while he was able to help make those decisions and sign his hame. I'm so glad we did, as it made the transition so much easier when I had to make all the decisions with Medicaid and Veterans pension 6 months later when we had to admit him to a care center.
He died a week ago, February 8, and we will have memorial services tomorrow so this past week has been a little hectic, but could have been so much worse. We just had to visit with funeral home to make final preparations, but the financial matters were all taken care of. Still plenty to do, but time to take care of that the next few weeks.
It is hard but I know he is in a better place. He had very little quality of health in the past year, and slept most of the time.

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@rmftucker I am so sorry for your loss. I am sure this is an incredibly difficult time. I send you my best wishes for continued strength, courage, and some peace.

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@greff

May God comfort you and your family Scott.

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Thanks @greff I appreciate the kind words.

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@rmftucker

Just an addition to Scott's wise words. Those of us beginning this journey have a hard road ahead. My husband and I made sure our wills were updated, and we had the health and financial forms signed and notarized, and the funeral arrangements all taken care of about 4 years ago while he was able to help make those decisions and sign his hame. I'm so glad we did, as it made the transition so much easier when I had to make all the decisions with Medicaid and Veterans pension 6 months later when we had to admit him to a care center.
He died a week ago, February 8, and we will have memorial services tomorrow so this past week has been a little hectic, but could have been so much worse. We just had to visit with funeral home to make final preparations, but the financial matters were all taken care of. Still plenty to do, but time to take care of that the next few weeks.
It is hard but I know he is in a better place. He had very little quality of health in the past year, and slept most of the time.

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Hello @rmftucker,

I would like to add my words of condolence as well. It sounds like you and your husband took good care of each other after he became ill. Your timing was certainly good!

Take good care of yourself as you deal with this loss and began to move forward. If you care to share your feelings of loss, I would invite you to join Connect's Loss and Grief discussion group. Here is the link to that group, https://connect.mayoclinic.org/group/loss-grief/.

Do you have a lot of family and friends to support you along this journey?

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@rmftucker

Just an addition to Scott's wise words. Those of us beginning this journey have a hard road ahead. My husband and I made sure our wills were updated, and we had the health and financial forms signed and notarized, and the funeral arrangements all taken care of about 4 years ago while he was able to help make those decisions and sign his hame. I'm so glad we did, as it made the transition so much easier when I had to make all the decisions with Medicaid and Veterans pension 6 months later when we had to admit him to a care center.
He died a week ago, February 8, and we will have memorial services tomorrow so this past week has been a little hectic, but could have been so much worse. We just had to visit with funeral home to make final preparations, but the financial matters were all taken care of. Still plenty to do, but time to take care of that the next few weeks.
It is hard but I know he is in a better place. He had very little quality of health in the past year, and slept most of the time.

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@rmftucker, may God comfort you and your family.

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@hopeful33250

Hello @rmftucker,

I would like to add my words of condolence as well. It sounds like you and your husband took good care of each other after he became ill. Your timing was certainly good!

Take good care of yourself as you deal with this loss and began to move forward. If you care to share your feelings of loss, I would invite you to join Connect's Loss and Grief discussion group. Here is the link to that group, https://connect.mayoclinic.org/group/loss-grief/.

Do you have a lot of family and friends to support you along this journey?

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I do have a great support group with my facility and church family, and the many organizations I have been a very active part in even while dealing with Casey's illness. I always told them I would be able to help with anything I could do from home, calling, newsletters, etc. I did that for the last four – five years, so now will be able to pick up the pieces after I have knee replacement this spring. I am 84 so there is always something that needs fixing. My neighbors are great and always ready to help out. God is good.

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@rmftucker

I do have a great support group with my facility and church family, and the many organizations I have been a very active part in even while dealing with Casey's illness. I always told them I would be able to help with anything I could do from home, calling, newsletters, etc. I did that for the last four – five years, so now will be able to pick up the pieces after I have knee replacement this spring. I am 84 so there is always something that needs fixing. My neighbors are great and always ready to help out. God is good.

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I am so glad to hear about your activities, support and plans for the future, @rmftucker.

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@rmftucker

I do have a great support group with my facility and church family, and the many organizations I have been a very active part in even while dealing with Casey's illness. I always told them I would be able to help with anything I could do from home, calling, newsletters, etc. I did that for the last four – five years, so now will be able to pick up the pieces after I have knee replacement this spring. I am 84 so there is always something that needs fixing. My neighbors are great and always ready to help out. God is good.

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@rmftucker I too send you strength and peace as you navigate these new waters of loss. You are wise to have built such a strong network of friends and community around you. I hope that you are able to accept the support they will want to offer and give them the gift of paying it forward (or back perhaps in your case). You've given so much as you do here in the Connect community.

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Thank you for your kind words. I will continue to attend the Alzheimer’s support group here since I enjoy visiting with these people and my daughter said I could help others with their journey. Everyone is so afraid I will be lonesome, but I really lost my husband when I had to take him to the care center 3 years ago. and since he was not at home from then on, I really don't notice it so much. He was also a long=haul truck driver for 10 years prior to retirement, and I was used to not having him there all the time. He did call me every night but I don't think Heaven has cellphone service. I will just keep him in my prayers and I will be alright. I will keep encouraging people to keep in touch with friends and family through their journey. It really does help. And don't be afraid to ask for their help, as they want to help but don't know what you need.

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@rmftucker

Thank you for your kind words. I will continue to attend the Alzheimer’s support group here since I enjoy visiting with these people and my daughter said I could help others with their journey. Everyone is so afraid I will be lonesome, but I really lost my husband when I had to take him to the care center 3 years ago. and since he was not at home from then on, I really don't notice it so much. He was also a long=haul truck driver for 10 years prior to retirement, and I was used to not having him there all the time. He did call me every night but I don't think Heaven has cellphone service. I will just keep him in my prayers and I will be alright. I will keep encouraging people to keep in touch with friends and family through their journey. It really does help. And don't be afraid to ask for their help, as they want to help but don't know what you need.

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Thank you so much for wanting to continue attending the support group @rmftucker Your continued support and guidance will mean so much to others on the same journey.

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