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.

@tntredhead

Thank you, Scott, for inviting me to join this group. My husband was diagnosed about six years ago and things have deteriorated very fast in the past two years. I am the only caregiver as our only child lives about 3000 miles from us as does her only child. I have a caregiver come in for two hours every morning to get him up and dressed as I have two torn rotator cuffs and can’t life him. Then I have someone come in for two hours in the evening to shower him and get him to bed. During the day I am required to get him to the bathroom and table so I can feed him his meals. He is 78 years old, a retired Air Force Officer and it is killing me to see him like this. Plus it is killing me trying to take care of him. I think about taking him back to Assisted Living where he stayed for two months but he was so sad there and expected me to be there at least 8 hours each day. I feel angry, guilty, tired and very depressed but always tell myself that tomorrow will be better. Our neighborhood is lovely but not one of those where you drop in at your neighbor’s for coffee. One couple drops by to check on us about once a week but the others may call and say “call me if I can do anything” and I am not the type of person to ask for help. Some days I just don’t want to get up and that is very weak and I know that.

Jump to this post

@IndianScott. Thanks for the encouraging words. It seems you have been where I am now and I appreciate knowing that I am not the loser I sometimes think I am. But today was a good day. I took 90 minutes out tonight, hired a givegiver for a longer period of time and spent those few minutes with 12 great female friends working on a project for others. It made me feel so good to be able to have a conversation about mundane things – not about the problems I face everyday. Now I think I have the courage to face tomorrow and whatever it brings. I loved your statement that courage is simpler taking on our “fight” for our loved one the next day. You are so right. One question though – did your wife get upset when you took a few minutes for yourself? My hubby tries not to show it but I always pay them price the next day.

REPLY
@tntredhead

Thank you, Scott, for inviting me to join this group. My husband was diagnosed about six years ago and things have deteriorated very fast in the past two years. I am the only caregiver as our only child lives about 3000 miles from us as does her only child. I have a caregiver come in for two hours every morning to get him up and dressed as I have two torn rotator cuffs and can’t life him. Then I have someone come in for two hours in the evening to shower him and get him to bed. During the day I am required to get him to the bathroom and table so I can feed him his meals. He is 78 years old, a retired Air Force Officer and it is killing me to see him like this. Plus it is killing me trying to take care of him. I think about taking him back to Assisted Living where he stayed for two months but he was so sad there and expected me to be there at least 8 hours each day. I feel angry, guilty, tired and very depressed but always tell myself that tomorrow will be better. Our neighborhood is lovely but not one of those where you drop in at your neighbor’s for coffee. One couple drops by to check on us about once a week but the others may call and say “call me if I can do anything” and I am not the type of person to ask for help. Some days I just don’t want to get up and that is very weak and I know that.

Jump to this post

Good morning @tntredhead. YES, always! Earlier in her disease I had a job and while she understood my being away for that, she did not take well to any other absence. Then after I was fired by a new boss who didn’t want an employee who ‘had split allegiances’, she became much more so. She wanted me in her sight all the time! ALL the time.

Part of this, I was told by her neuro-oncologist was very common with brain cancer/TBI patients in that they often lose their ability to comprehend the concept of multi-tasking. My wife would get upset whenever I would simply glance at my phone, or the newspaper. Our home went the last 9 years of her illness with never having a TV or radio on. She would get upset with me if I even mentioned ‘I have a phone call to make tomorrow’ or ‘we are out of XYZ and I have to run to the grocery tomorrow when the aide is here’,

I just kept telling myself it was the disease, not her, angry with me, but again as her neuro doc said to me ‘patients often lash out most at those they trust, love, and need the most in their care. Their fears just take over.’

Peace and courage — and if you are up North anywhere —- STAY WARM! We are at -8 here this morning!

REPLY

Courage to all of us caring for dementia patients. I try to look at the good things and take each day as it comes. I am fairly new at this since my husband was diagnosed with Alzheimer’s Disease with vascular dementia in late July, although I had noticed things for the past few years. One of the most irritating problems is his jealousy. He gets really upset when the neighbor (a man or his son) brings the garbage can in from the road or bring s the daily newspaper from the dropbox to the front door or any man shows any attention to me. Then he insinuates that they are trying to “come on” to me. I feel badly about this as I can not thank them for their help when they are just being neighborly.

My husband has always noticed the “ladies” and been a big hugger. I have laughingly gone along with his comments through the years since it has all been in fun, and I would reply “He can look but not touch.” We have been married 62 years this month and that is just the way he is. But now he insinuates that I would have an affair if given the opportunity. I know it is the disease, but it hurts to have him make these comments to me.

We’re looking forward to Christmas with our family and a Merry Christmas to everyone. I enjoy reading these messages.

Liked by macbeth

REPLY
@macbeth

@kmkm

We may be in the same stage, except that we do have the car every day. I would be interested in the suggestions of others, too. We often go for rides, or out for coffee, but there must be more!

Macbeth

Jump to this post

This is what I do with my husband too, walks, rides and out for coffee as he too never had any other interests that he can do now. I like to shop, (mostly just to look) so we go “to the store”, any store, such as the grocery store, and he follows me around, sort of looks at merchandise with me but not sure how much he takes in. Luckily he has no other health issues.

Liked by macbeth

REPLY
@pearlandpeacock

@macbeth What you describe sounds like my husband. I also think he’s had it for 6 or 7 years though formally diagnosed only three years ago. It was slow at first but the past couple of months it seems more rapid. I do want him on another drug, the experimental one. It is scary for me and I guess for him, though he is in denial. He can’t fill in a form, he puts the info in the wrong blank, etc. And he asks to go home when we are at home. I am his sole caregiver. He likes to go for drives. Once he drove me around, now the role is reversed. I try to go out everyday. I like to shop, so that’s mostly what we do and he follows me around and I talk to (or at) him but he never really listens. But then he never did!

The other day while shopping he got disoriented and wanted to take the bus home alone, he asked and was provided directions by a stranger who probably didn’t detect any problem. (I was observing from afar.) I had to convince him to stay with me as we were way out in the suburbs.

I am grateful that I was offered in home relief for 20 hours a month!

Jump to this post

I think it is AZT-100, his doctor approved him for the program, she said he’s still youngish and has no other health issues. However, she indicated there is more than one possible drug and they will tailor it to him. So we are waiting for a call from the clinic to find out. I will let you know.

Liked by macbeth

REPLY

Hi – I am new to this forum and have very much appreciated all the information posted here. My situation is a little different in that my partner of 35 years does not live with me. He lives app. 1 mile away. When we first started dating we both had children and trying to live together at that point was not feasible, and it has just stayed that way. I have a good relationship with his daughters, but am the primary care giver. He has early to mid alz. He drives but only as far as my house or to the gas station etc . Everything is within a 5 mile radius. He spends most of the time with me. He can still use the phone, TV, heat meals in the microwave etc. He has no memory of recent events, but his long term memory is good.

My big concern now is that we are going on a cruise in January. I had planned on just having dinner each night without a reservation so that we didn’t sit with the same people every night. Unfortunately, I have found out that they do not have anytime dining on this ship, only assigned dining. So it will be with the same people every night. As this is a 24 day cruise I am concerned about how to handle his dementia. He interrupts others conversation, talks about something that has no relationship to the conversation and says things that are absolutely impossible (ie he skated across the Atlantic ocean when it froze over). How should I handle this? I am concerned for the other people at our table.

Should I try to tell them he has alz, just not say anything? Thanks

REPLY
@traveler17

Hi – I am new to this forum and have very much appreciated all the information posted here. My situation is a little different in that my partner of 35 years does not live with me. He lives app. 1 mile away. When we first started dating we both had children and trying to live together at that point was not feasible, and it has just stayed that way. I have a good relationship with his daughters, but am the primary care giver. He has early to mid alz. He drives but only as far as my house or to the gas station etc . Everything is within a 5 mile radius. He spends most of the time with me. He can still use the phone, TV, heat meals in the microwave etc. He has no memory of recent events, but his long term memory is good.

My big concern now is that we are going on a cruise in January. I had planned on just having dinner each night without a reservation so that we didn’t sit with the same people every night. Unfortunately, I have found out that they do not have anytime dining on this ship, only assigned dining. So it will be with the same people every night. As this is a 24 day cruise I am concerned about how to handle his dementia. He interrupts others conversation, talks about something that has no relationship to the conversation and says things that are absolutely impossible (ie he skated across the Atlantic ocean when it froze over). How should I handle this? I am concerned for the other people at our table.

Should I try to tell them he has alz, just not say anything? Thanks

Jump to this post

That is a tough one. I’m fairly new here. I’m curious as to what others say?

My husband does the same sort of thing to me, (says things that don’t make sense, doesn’t listen or understand instructions), but in public he says nothing, except an agreeable “OK”, or “whatever you want”. He’s always been like that, very shy…to the point of embarrassment, one guy asked “Do you talk?”. How bad is your husband? I’d be inclined to tell them he has mild forgetfulness (to minimize it) and hopefully they will understand.

People pick up that my husband is “aging” now after talking with him for a few minutes. At first it wasn’t so obvious.

REPLY
@rmftucker

Courage to all of us caring for dementia patients. I try to look at the good things and take each day as it comes. I am fairly new at this since my husband was diagnosed with Alzheimer’s Disease with vascular dementia in late July, although I had noticed things for the past few years. One of the most irritating problems is his jealousy. He gets really upset when the neighbor (a man or his son) brings the garbage can in from the road or bring s the daily newspaper from the dropbox to the front door or any man shows any attention to me. Then he insinuates that they are trying to “come on” to me. I feel badly about this as I can not thank them for their help when they are just being neighborly.

My husband has always noticed the “ladies” and been a big hugger. I have laughingly gone along with his comments through the years since it has all been in fun, and I would reply “He can look but not touch.” We have been married 62 years this month and that is just the way he is. But now he insinuates that I would have an affair if given the opportunity. I know it is the disease, but it hurts to have him make these comments to me.

We’re looking forward to Christmas with our family and a Merry Christmas to everyone. I enjoy reading these messages.

Jump to this post

Thanks for that, that is eye-opening. My husbands father (whom I never met) was like that to my husbands mother in the 1950’s to an abusive point. He would lock the poor woman inside for fear she was having an affair. At first I did not realize my husbands father was a victim of Alzheimers. But now that hubby has it, it all makes sense.

REPLY
@traveler17

Hi – I am new to this forum and have very much appreciated all the information posted here. My situation is a little different in that my partner of 35 years does not live with me. He lives app. 1 mile away. When we first started dating we both had children and trying to live together at that point was not feasible, and it has just stayed that way. I have a good relationship with his daughters, but am the primary care giver. He has early to mid alz. He drives but only as far as my house or to the gas station etc . Everything is within a 5 mile radius. He spends most of the time with me. He can still use the phone, TV, heat meals in the microwave etc. He has no memory of recent events, but his long term memory is good.

My big concern now is that we are going on a cruise in January. I had planned on just having dinner each night without a reservation so that we didn’t sit with the same people every night. Unfortunately, I have found out that they do not have anytime dining on this ship, only assigned dining. So it will be with the same people every night. As this is a 24 day cruise I am concerned about how to handle his dementia. He interrupts others conversation, talks about something that has no relationship to the conversation and says things that are absolutely impossible (ie he skated across the Atlantic ocean when it froze over). How should I handle this? I am concerned for the other people at our table.

Should I try to tell them he has alz, just not say anything? Thanks

Jump to this post

Hi @traveler1717.
Earlier this month we had a similar question from @traveler17
https://connect.mayoclinic.org/discussion/meet-fellow-caregivers-introduce-yourself/?pg=1#post-243210
Could it be that you created a second account? If you like, please send me an email using this form and I can help merge the 2 accounts https://connect.mayoclinic.org/contact-a-community-moderator/

REPLY
@pearlandpeacock

@macbeth What you describe sounds like my husband. I also think he’s had it for 6 or 7 years though formally diagnosed only three years ago. It was slow at first but the past couple of months it seems more rapid. I do want him on another drug, the experimental one. It is scary for me and I guess for him, though he is in denial. He can’t fill in a form, he puts the info in the wrong blank, etc. And he asks to go home when we are at home. I am his sole caregiver. He likes to go for drives. Once he drove me around, now the role is reversed. I try to go out everyday. I like to shop, so that’s mostly what we do and he follows me around and I talk to (or at) him but he never really listens. But then he never did!

The other day while shopping he got disoriented and wanted to take the bus home alone, he asked and was provided directions by a stranger who probably didn’t detect any problem. (I was observing from afar.) I had to convince him to stay with me as we were way out in the suburbs.

I am grateful that I was offered in home relief for 20 hours a month!

Jump to this post

@pearlandpeacock

Thank you. I am very interested in hearing how it works out.

Macbeth

REPLY
@traveler17

Hi – I am new to this forum and have very much appreciated all the information posted here. My situation is a little different in that my partner of 35 years does not live with me. He lives app. 1 mile away. When we first started dating we both had children and trying to live together at that point was not feasible, and it has just stayed that way. I have a good relationship with his daughters, but am the primary care giver. He has early to mid alz. He drives but only as far as my house or to the gas station etc . Everything is within a 5 mile radius. He spends most of the time with me. He can still use the phone, TV, heat meals in the microwave etc. He has no memory of recent events, but his long term memory is good.

My big concern now is that we are going on a cruise in January. I had planned on just having dinner each night without a reservation so that we didn’t sit with the same people every night. Unfortunately, I have found out that they do not have anytime dining on this ship, only assigned dining. So it will be with the same people every night. As this is a 24 day cruise I am concerned about how to handle his dementia. He interrupts others conversation, talks about something that has no relationship to the conversation and says things that are absolutely impossible (ie he skated across the Atlantic ocean when it froze over). How should I handle this? I am concerned for the other people at our table.

Should I try to tell them he has alz, just not say anything? Thanks

Jump to this post

Yes, I did mistakenly sign up for two accounts. Could you please merge them for me. I appreciate the assistance.

REPLY
@traveler17

Hi – I am new to this forum and have very much appreciated all the information posted here. My situation is a little different in that my partner of 35 years does not live with me. He lives app. 1 mile away. When we first started dating we both had children and trying to live together at that point was not feasible, and it has just stayed that way. I have a good relationship with his daughters, but am the primary care giver. He has early to mid alz. He drives but only as far as my house or to the gas station etc . Everything is within a 5 mile radius. He spends most of the time with me. He can still use the phone, TV, heat meals in the microwave etc. He has no memory of recent events, but his long term memory is good.

My big concern now is that we are going on a cruise in January. I had planned on just having dinner each night without a reservation so that we didn’t sit with the same people every night. Unfortunately, I have found out that they do not have anytime dining on this ship, only assigned dining. So it will be with the same people every night. As this is a 24 day cruise I am concerned about how to handle his dementia. He interrupts others conversation, talks about something that has no relationship to the conversation and says things that are absolutely impossible (ie he skated across the Atlantic ocean when it froze over). How should I handle this? I am concerned for the other people at our table.

Should I try to tell them he has alz, just not say anything? Thanks

Jump to this post

No problem. We’ll get it sorted.

REPLY
@traveler17

Hi – I am new to this forum and have very much appreciated all the information posted here. My situation is a little different in that my partner of 35 years does not live with me. He lives app. 1 mile away. When we first started dating we both had children and trying to live together at that point was not feasible, and it has just stayed that way. I have a good relationship with his daughters, but am the primary care giver. He has early to mid alz. He drives but only as far as my house or to the gas station etc . Everything is within a 5 mile radius. He spends most of the time with me. He can still use the phone, TV, heat meals in the microwave etc. He has no memory of recent events, but his long term memory is good.

My big concern now is that we are going on a cruise in January. I had planned on just having dinner each night without a reservation so that we didn’t sit with the same people every night. Unfortunately, I have found out that they do not have anytime dining on this ship, only assigned dining. So it will be with the same people every night. As this is a 24 day cruise I am concerned about how to handle his dementia. He interrupts others conversation, talks about something that has no relationship to the conversation and says things that are absolutely impossible (ie he skated across the Atlantic ocean when it froze over). How should I handle this? I am concerned for the other people at our table.

Should I try to tell them he has alz, just not say anything? Thanks

Jump to this post

Unfortunately he is very outgoing. I don’t want other people to feel uncomfortable around him but that may not be possible. I like your suggestion of just saying he is dealing with aging and forgetfulness. Sure hope this works out.

REPLY

My husband will be 69 in January, he was diagnosised with ALZ three years ago, but I’m sure he was suffering with it for at least two years prior to that. He has always been quiet, but the ALZ has made him more “bold” in his comments and actions. I am younger and have to work fulltime, he does well at home and still just suffers from the short term memory and processing. My biggest hurdle has been his driving. The doctors have all said for 2 years he should not drive. However, when I take that away it takes his independence and pride. I have really struggled with what to do. I did go to one vehicle so when he does drives I’m either in the car or he goes short distances. I know the risks and at this point so does he. He has a friend that takes him places sometimes, but not often and I don’t want to impose. He also has other medical problems that require diffirent specialists so I miss a lot of work taking him to those appointments. Any words of wisdom or advice on how to determine when stop his driving altogether or possible safety suggestions?

REPLY

I am so sorry for all your stress. I understand My Mom thankfully never drove but her uncle went through this step in his illness. His daughter took the approach that if the Doctors have said this is to be ,then it is so. The keys stay with her Its not an option anymore.
She had a fight at first until she told him that it is not for just worrying about his safety but for the safety of some small child that doesn’t know any better & walks in front of his car or a young family with a car full of kiddies that don’t survive or the children have to live their lives without their parents. His reaction times are not what they should be. The Doctors said so.
He didn’t like it & protested at first but she spoke quietly & stood firm on it. In some cases thats all you can do. Stand firm, don’t cave. Speak quietly & calmly but with firmness.
It is hard to accept , but you are the responsible adult now. You have to be there in that capacities for him from now on. That was one of the most difficult things , that affected me with my Mom & alz. Knowing that her sense of reasoning is now depleted lets say. More childlike & I am the resonsible adult now its up to you to take action Not wait Sorry. Hugs.

Liked by Debby - @tavi

REPLY
Please login or register to post a reply.