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.

@juani

This is my first time as a group follower and I am not very sure how does this work. Here it goes. I am caring for my mother. She is 88 years old, lives indepedently in her own apartment, alone. She has mixed dementia: alzheimer and micro vascular problems. She is experiencing the usual: memory loss, both short and long term, and some cognitive impairment. I have get accostumed to hear her stories and questions one time and another. That's ok with me. But I am experiencing a problem with which I have no idea how to deal with. (sorry my english....I am a spanish speaking person). The problem is that she has begun to have problems with the lady that helps her at home one day each week. My mom is accusing her of stealing. Different kind of things. From money to little scissors, peanuts'cans or DVDs. This lady has worked with her for more than 20 years, she knows my mother very well and has huge patience with her and her style of asking for things. But this lady also has had a couple of episodes of money stealing, recognized by this lady and forgiven and forgotten. Though I am pretty sure that most if not all of my mom's accusations are product of her imagination or a consequence of her problems to remember where she left things, it is possible (though very unlikely) that some of them could be truth. This lady works also at my home a couple of days. This issue has become a source of conflict and stress in my relationship with my mother. Though I understand my mother, I can't bear her unjust treatment to this lady (it makes me furious). Also, I can't imagine someone else helping my mother and taking her bossy style with how to do things at home. Not for long. And even if my mother accepted to come to live with me (which she has refused consistenly), I would have the problem at my home, because the same lady works with me. Yesterday night, after one of the episodes over the telephone, I felt so helpless that I even thought of taking my dogs and dissapear and go far away. Another city. Another place. Leave my mom all alone. I felt so overwhelmed that coping with the guilt of abandoning her seemed less troublesome to me than keeping on facing the whole challenge. Today, everything is back to "normal" but I have to find a solution. Any ideas? any suggestions?

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@harriethodgson1

Wonderful!

Teresa

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@juani

This is my first time as a group follower and I am not very sure how does this work. Here it goes. I am caring for my mother. She is 88 years old, lives indepedently in her own apartment, alone. She has mixed dementia: alzheimer and micro vascular problems. She is experiencing the usual: memory loss, both short and long term, and some cognitive impairment. I have get accostumed to hear her stories and questions one time and another. That's ok with me. But I am experiencing a problem with which I have no idea how to deal with. (sorry my english....I am a spanish speaking person). The problem is that she has begun to have problems with the lady that helps her at home one day each week. My mom is accusing her of stealing. Different kind of things. From money to little scissors, peanuts'cans or DVDs. This lady has worked with her for more than 20 years, she knows my mother very well and has huge patience with her and her style of asking for things. But this lady also has had a couple of episodes of money stealing, recognized by this lady and forgiven and forgotten. Though I am pretty sure that most if not all of my mom's accusations are product of her imagination or a consequence of her problems to remember where she left things, it is possible (though very unlikely) that some of them could be truth. This lady works also at my home a couple of days. This issue has become a source of conflict and stress in my relationship with my mother. Though I understand my mother, I can't bear her unjust treatment to this lady (it makes me furious). Also, I can't imagine someone else helping my mother and taking her bossy style with how to do things at home. Not for long. And even if my mother accepted to come to live with me (which she has refused consistenly), I would have the problem at my home, because the same lady works with me. Yesterday night, after one of the episodes over the telephone, I felt so helpless that I even thought of taking my dogs and dissapear and go far away. Another city. Another place. Leave my mom all alone. I felt so overwhelmed that coping with the guilt of abandoning her seemed less troublesome to me than keeping on facing the whole challenge. Today, everything is back to "normal" but I have to find a solution. Any ideas? any suggestions?

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Hello @mtnview I am Scott and nice to e-meet you here at Connect! I am sorry to hear of your husband's journey with Alzheimer's. Caregiving is a huge challenge and one which has many of its own unique challenges. I was my wife' primary caregiver for over 14 years and as I like to say "it was the only job I ever held where there was no employee manual and no advance training required." It was just jump into the ocean and see how well you might be able to swim to the far shore!

You will find this group to be good listeners and very good at sharing ideas, hints, tricks, and suggestions. Caregiving, at least for me, was tremendously isolating and I found Connect to be a great tool to help break what isolation I could!

Lovely to have you here and feel free to ask any questions you might have! Over all do you feel like you are basically doing OK?

Strength, Courage, and Peace!

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First time on this site. Wife (79) has had dementia for about 6 years. Getting worse. Still remembers family and some friends but not all of them. Very small appetite but is holding steady the past few months. Have concerns about costs of providing care for her at home when needed. Anyone have info about what to expect in costs and can recommend a provider. Bob

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@12131209

First time on this site. Wife (79) has had dementia for about 6 years. Getting worse. Still remembers family and some friends but not all of them. Very small appetite but is holding steady the past few months. Have concerns about costs of providing care for her at home when needed. Anyone have info about what to expect in costs and can recommend a provider. Bob

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Welcome to Connect, Bob. I moved your message to the Caregivers group where you meet many others caring for spouses and parents with Alzheimer's,like @IndianaScott @lindabf @harriethodgson1 @juani @mnitchke @mnina and many more. You are not alone.

Bob, I encourage you to follow the Caregivers group here:
Join any of the discussions of interest to you.

Your concerns about the costs of providing care for your wife at home is a good topic to bring to the group -- what to expect and how to find good help, etc. Do you have support workers or nurses coming to your home now to help you with her care?

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@12131209

First time on this site. Wife (79) has had dementia for about 6 years. Getting worse. Still remembers family and some friends but not all of them. Very small appetite but is holding steady the past few months. Have concerns about costs of providing care for her at home when needed. Anyone have info about what to expect in costs and can recommend a provider. Bob

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Hi @12131209 Nice to e-meet you here Bob. I am Scott and I was the primary caregiver for my wife for 14+ years while she battled brain cancer (at home) and was one of the secondary caregivers for my mother-in-law while she battled dementia (also at home). I am sorry to hear of the difficulties your wife is experiencing with this terrible disease and the journey you are on as a caregiver. It is a tough one for each of you.

Cost of care can vary by state, location, what supplemental insurances you might carry, etc. It also can vary according to what additional services might be needed or necessary in a home care environment. Sometimes care alternatives such as specialized facilities, can also come into play. These again can vary greatly by state and locations within a state. I know the care costs for support care were even different from city to city or city to suburbs.

One other significant issue can be costs of medicines, which again can be dependent on what coverages you have and if you are covered under private insurance, Medicare, Medicaid, supplemental policies, etc.

What area are you in? Also have you taken a close look at your medical coverage booklets to see what they describe when it comes to coverages, such as in-home aides, changes to your home if necessary, etc? Also there can be changes in what is covered if hospice care comes into play, both home hospice (which my wife chose) and hospice in a facility.

While I don't have a ton of answers, these questions might help get the conversation going in the right direction. I am happy to help with examples of at least what I had to cover for my wife and with my MIL.

Courage, strength, and peace!

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I am primary caretaker for my wife. She is now in late stage alzhiemers. 15 years ago she was diagnosed with Minimal cognitive decline. I am 77 she is 78, Living at home with me. It has become difficult for me to get everything done because of the amount of time required for her care. I am thinking of hiring some one to be with her while I do outside necessary work. Any advise from someone who has been through this?

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@alanm

I am primary caretaker for my wife. She is now in late stage alzhiemers. 15 years ago she was diagnosed with Minimal cognitive decline. I am 77 she is 78, Living at home with me. It has become difficult for me to get everything done because of the amount of time required for her care. I am thinking of hiring some one to be with her while I do outside necessary work. Any advise from someone who has been through this?

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Hi @alanm, Welcome to the Caregivers group. I moved your message to the main discussion to introduce you to other members caring for a partner, parent or loved one with Alzheimer's. In fact, Bob (@12131209) joined the group only yesterday with a very similar circumstance to your own. He is caring for his wife (79) and is asking about care at home, the costs and what to expect. Click VIEW & REPLY in the email notification and you'll be able to scroll through the previous messages and read about other members like @suzie2017 @mojo1965 @rmftucker @kmkm @macbeth and more.

Have you been taking care of all her needs on your own up to now, Alan?

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@alanm

I am primary caretaker for my wife. She is now in late stage alzhiemers. 15 years ago she was diagnosed with Minimal cognitive decline. I am 77 she is 78, Living at home with me. It has become difficult for me to get everything done because of the amount of time required for her care. I am thinking of hiring some one to be with her while I do outside necessary work. Any advise from someone who has been through this?

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Hi @alanm I am sorry to hear of your wife's medical journey. I am Scott and I was my wife's primary caregiver for 14 years. Although she had brain cancer, many of her symptoms were dementia-like and we, too, struggled with getting good help for her and to help me. You are right in saying caregiving can be all consuming.

I know each situation and location is unique in this regard, but in our case we tried a wide range of sources for help (advertising in the local newspaper, online, non-profits, for-profits, etc.) and finally discovered the best avenue for us was talking with the staff at our local hospice organization. They had the names of a few local folks who were either between assignments or were looking for extra hours of work. These folks far outstripped any of the other dozens we used from time to time. For us they were the best we found over the years.

Strength, courage, and peace!
Scott

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@alanm

I am primary caretaker for my wife. She is now in late stage alzhiemers. 15 years ago she was diagnosed with Minimal cognitive decline. I am 77 she is 78, Living at home with me. It has become difficult for me to get everything done because of the amount of time required for her care. I am thinking of hiring some one to be with her while I do outside necessary work. Any advise from someone who has been through this?

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Alan - yes, no outside help in care of wife. Not a problem now, but I do about everything except no personal care which she is able to handle. Of course, like many others, take her every where we go. Her balance has gotten worse, is much slower in walking and other things, less appetite and getting frail. Doesn't talk as much as before as she claims to forget the subject she was going to make. Usually in good spirits and understands what is happening to her and what we are facing in the future. The best to you in your challenges in care.

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@alanm

I am primary caretaker for my wife. She is now in late stage alzhiemers. 15 years ago she was diagnosed with Minimal cognitive decline. I am 77 she is 78, Living at home with me. It has become difficult for me to get everything done because of the amount of time required for her care. I am thinking of hiring some one to be with her while I do outside necessary work. Any advise from someone who has been through this?

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Indiana - your comments are appreciated. Good info and I had not thought of contacting hospice for potential names to assist. Will do it. The best of health to you and yours, Bob

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