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.

@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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My husband had cancer 20 years ago and they removed his kidney. He did very well until he got throat cancer a year and a half ago. He had radiation and cancer was gone. In the middle of the treatment he showed signs of mild cognitive impairment. It seems like it is getting worse. He has no energy and sleeps all night but a good part of the day.

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@ganz

My husband had cancer 20 years ago and they removed his kidney. He did very well until he got throat cancer a year and a half ago. He had radiation and cancer was gone. In the middle of the treatment he showed signs of mild cognitive impairment. It seems like it is getting worse. He has no energy and sleeps all night but a good part of the day.

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Hello @ganz Nice to e-meet you here on Mayo Connect. I am sorry to read of your husband's healthcare journey.

I know from being my wife's caregiver that times of change can be very difficult and unsettling.

How long have you seen this latest change and have you seen other effects of his MCI?

Strength, courage, and peace

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@IndianaScott

Hello @ganz Nice to e-meet you here on Mayo Connect. I am sorry to read of your husband's healthcare journey.

I know from being my wife's caregiver that times of change can be very difficult and unsettling.

How long have you seen this latest change and have you seen other effects of his MCI?

Strength, courage, and peace

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I did not include that after routine ct and check e/ray that he has modules on his lungs. They drained the fluid build up and are waiting to hear next week the results.

As far as the MCI goes he recognizes family and recalls past family events. Sometimes he walks into the kitchen and knows where things are but other times looks confused.

If we have an appointment I will tell when we have to go and when it is time to go he asks where are we going. Other times he remembers that we are going.

His motor skills are getting worse. He walks very gingerly and slow. This has been increased the last several months.

He also wears depends but our bed is wet every night.

I do not know what the progression is with MCI.

Thank you so much for getting back to me.

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