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.

@clayton48

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?

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Bless you foxylady42:
Great suggestion with the license bureau, I was hoping they would call him in to drive and that might still happen, don’t know
how Michigan handles these issues just yet. Our journeys are long and lonely at times, but somehow we find the strength
to keep going. I have obtained some help from VA three times a week for two hours and that is a God Send so I can get away
to do shopping and working and etc. You are not alone in your battle and know we are here to listen. Ozys

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@clayton48

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?

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a2ozys. – What steps did you take to get help from the VA?  My husband is 100% disabled and the VA has offered things to me but never help for taking care of him.  Although I have help that I pay for myself, I am either going to have to have more help or place him in a facility and that thought kills me.  You are right we somehow find the strength to keep going but there are many days I wonder if I can make it.The Redhead

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@clayton48

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?

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Hi there TNTRedhead:
When we went for the yearly check up with my husband’s primary care doc at the VA, I just told them I needed help with care and
they gave him 12 hours a week through the senior center here. However, the senior center does not have the program to bill VA
so only receive six hours for now and when we really need the other six hours, will go back to VA and get help. VA also supplied
the hospital bed which is just a wonderful gift. My husband has a horrible time with balance and getting up and down so the rails
on the bed have been wonderful. There will be a monthly nurse also once I request it. Just think of the help you need and ask,
they can refuse but more is being done everyday for our vets. Good Luck and keep on as best you can. Ozys

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@clayton48

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?

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Thanks @ozys.  I will definitely be in touch with the VA later this week.The Redhead

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@clayton48

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?

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At one of the appointments we had with the neurology department at the VA hospital, I mentioned that my family was concerned for my health if I continued to care for my husband at home, and they referred me to the local Social Worker at the local VA Clinic. She called very soon and we discussed what would be most helpful for me. We were given respite care which was provided by a local care group at 6 hours a week, and then in November when we reassessed the care, we were assigned 3 hours a week for each home health and homemaker. She said we would probably be assigned respite care after the first of the year again. This help has really made a difference.

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@clayton48

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?

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Hey Redhead,

They are talking about the VA Home Health Aid Program. The VA qualifies and pays the private company to come in and help depending on your needs. You might look into the VA Aid and Attendance Program, there is a financial need that has to be met for that, but once you get approved the benefit comes directly to you in the way of a direct deposit and you determine how to use the monthly monetary benefit. The process is difficult but there are several organizations that will help, DAV; AMVETS; and such. Go to http://www.VA.gov and search for Aid and Attendance for the details. If you qualify for it, I can assure you it IS WORTH IT!! My Mother was qualified for it last year and it has made a big difference. Good luck!!

Tsoy

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@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I’m tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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My Mom has vascular dementia. She is farther advanced than your husband. She picks at the skin on her arm. I have discussed this with her doctor who says it is a stress reaction. It sounds like the same from your husband. Hopefully his scratching is not hurtful. My Mom actually picks repeatedly and has created scabs. Get your husband checked by a doctor. Also I’ve noted that some things will get stuck, as if on a loop, and they will ask the same question over and over. Some times just seconds after you just answered it. We do 2 things 1) ask them what you just said and may take some prompting like the first letter of the word. 2) write the answer down. They will pick up the paper and reread it. This will give you a break. Doing things that keep brain pathways going like leading them to the answers rather than just giving the answer (after you have give it to them once or twice) seems to help with retention a little longer.

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Hello. I am taking care of my 84 year old mom with alzheimers. My father passed in 2010, and before he died, i promised that i would take care of mom. The day he died, i never left. I have 2 brothers, the oldest was 61 when he passed last august suddenly due to septic shock and pneumonia, and i was taking care of him also. He never said he was sick, just he didnt feel good and blamed the COPD and allergies. He had become house bound with severe COPD and had cancer surgery and in remission in 2011. I was with him the monent he passed holding his hand and telling him it was ok to go be with dad and his son, that passed in 2007 with leukemia. My other brother that is 60, we hardly ever see unless I call and ask for help with mom, which i very seldom do because i figure he should want to see his mother and sister. I try to understand he has a family also, and just became a first time grandfather, but I also have 3 grandchildren and am 53, and we lost the 3 year old in 2015. I very seldom get to see the kids due to moms condition, she is barely able to walk most days, and the anger anxiety issues are becomming worse. In 2016 she was diagnosed with breast cancer in both, so there are more issues to try to deal with. I thank god for my fiancee, because this would not be easy alone. We are taking shifts staying up all night to watch mom and help her to the bathroom every 1 1/2 to 2 hours due to her falling and hitting her head and ending up in ER. And that is another complaint. They wanted to get a CT and xray, but with the anxiety issues, they drugged her up on ativan, haldol, and bennydryl. Then after saying they may keep her for observation released her. It took 3 of us to get her in the vehicle, she was so drugged she couldnt stand, walk or speak. Then before i got home with her they called to say they didnt know if they took the iv out before release. I was so angry with the hospital, that i will never take her to that one again. The issues with the alzheimers are beginning to grow since the hospital visit. The doctor has her on alprazolam as needed but 1/2 of a 25mg at bedtime to help her sleep. There are times she will get up in the middle of the night so angry pounding her fists and hitting things that i worry she may hurt herself. When this happens i will give her the whole tablet, and sometimes it works in an hour and sometimes it just escalates for the use of another 1/2 dose a while later.The next night after being released from er she ventured outside in 15 degree weather with just pj’s on and fell on the cement. I never heard the doors open and the dog never barked. She even shut both doors. That is why now we stay up all night keeping track of her. How do you get beyond you mother saying this isnt her house, she has no kids, she doesnt have a daughter, I’m just waiting for her to die, telling us she wished she was dead, or wants to shoot herself. It breaks my heart, and i try to redirect the conversation and sometimes it works, and sometimes not. How do you get them out of the loop they get stuck in back in the past. She talks of waiting for her mom and dad to come het her, but they both have been gone for decades and were divorced when she was around 6 years old. How do you get your brother to help out without sounding like a royal pain in the ass. What help can medicare and bluecross do for mom, or even myself for that fact. I had to quit working 6 months after dad died to take care of mom. ALL advice and opinions are welcomed. Just needing a little help and support as this keeps going.

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@conniesue2017

Hello. I am taking care of my 84 year old mom with alzheimers. My father passed in 2010, and before he died, i promised that i would take care of mom. The day he died, i never left. I have 2 brothers, the oldest was 61 when he passed last august suddenly due to septic shock and pneumonia, and i was taking care of him also. He never said he was sick, just he didnt feel good and blamed the COPD and allergies. He had become house bound with severe COPD and had cancer surgery and in remission in 2011. I was with him the monent he passed holding his hand and telling him it was ok to go be with dad and his son, that passed in 2007 with leukemia. My other brother that is 60, we hardly ever see unless I call and ask for help with mom, which i very seldom do because i figure he should want to see his mother and sister. I try to understand he has a family also, and just became a first time grandfather, but I also have 3 grandchildren and am 53, and we lost the 3 year old in 2015. I very seldom get to see the kids due to moms condition, she is barely able to walk most days, and the anger anxiety issues are becomming worse. In 2016 she was diagnosed with breast cancer in both, so there are more issues to try to deal with. I thank god for my fiancee, because this would not be easy alone. We are taking shifts staying up all night to watch mom and help her to the bathroom every 1 1/2 to 2 hours due to her falling and hitting her head and ending up in ER. And that is another complaint. They wanted to get a CT and xray, but with the anxiety issues, they drugged her up on ativan, haldol, and bennydryl. Then after saying they may keep her for observation released her. It took 3 of us to get her in the vehicle, she was so drugged she couldnt stand, walk or speak. Then before i got home with her they called to say they didnt know if they took the iv out before release. I was so angry with the hospital, that i will never take her to that one again. The issues with the alzheimers are beginning to grow since the hospital visit. The doctor has her on alprazolam as needed but 1/2 of a 25mg at bedtime to help her sleep. There are times she will get up in the middle of the night so angry pounding her fists and hitting things that i worry she may hurt herself. When this happens i will give her the whole tablet, and sometimes it works in an hour and sometimes it just escalates for the use of another 1/2 dose a while later.The next night after being released from er she ventured outside in 15 degree weather with just pj’s on and fell on the cement. I never heard the doors open and the dog never barked. She even shut both doors. That is why now we stay up all night keeping track of her. How do you get beyond you mother saying this isnt her house, she has no kids, she doesnt have a daughter, I’m just waiting for her to die, telling us she wished she was dead, or wants to shoot herself. It breaks my heart, and i try to redirect the conversation and sometimes it works, and sometimes not. How do you get them out of the loop they get stuck in back in the past. She talks of waiting for her mom and dad to come het her, but they both have been gone for decades and were divorced when she was around 6 years old. How do you get your brother to help out without sounding like a royal pain in the ass. What help can medicare and bluecross do for mom, or even myself for that fact. I had to quit working 6 months after dad died to take care of mom. ALL advice and opinions are welcomed. Just needing a little help and support as this keeps going.

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Hello @conniesue2017 I am Scott and it is nice to e-meet you here. I am sorry to hear of all your travails in your caregiving. Caregiving can be a relentless, isolating, and highly demanding journey. I am glad you are here with us! I am not a medical professional, but I was the secondary caregiving for my MIL who had dementia and the primary caregiver for my wife for 14 years while she battled brain cancer, which manifested itself with many dementia-like symptoms.

In reading your wonderful and open post, I wanted to chime in and say I recognize many of the issues you are dealing with in my own caregiving journey.

First, I would say you may want to consider a bell on the front door so you hear it open and close. I used a cheap bell like the kind in old stores. When the door opens, it hits it and rings. Cheap, but effective. Also many Alzheimer’s Associations’ state chapters have a kind of registry/notification program with the local police for wandering patients. Perhaps this could offer some level of comfort too.

Next, and I am not judging here at all, just saying something I learned the hard way in my years of caregiving. Don’t waste your energy waiting or wanting others to be different than they are. It is wasted energy. Early on I used too much of my limited energy wishing for my wife’s condition to change, others to change, help out more, even just show me they cared. You cannot control any of these things, so I learned to save my energy for my patient. The disease takes the path it wants. Others in our lives also take the path’s they want. Not the path we wish they would choose. In my case I have two sisters. They each came to visit only one time for an hour or so in the 14 years of my wife’s disease. The vast majority of our ‘friends’ also disappeared. They each did what they wanted to, even if it was not what I wished they would have. Caregiving demands so very, very much of us caregivers we need all our strength and focus for the huge job entrusted to us.

I send you peace, strength, and courage.

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Thank you so much for re -affirmimg what is told to me…let the family go do their own thing and not worry about them. Wishful thinking is just that, wishful thinking. My dad used to say wish in one hand and poop in the other and see which one fills up quicker. Just didnt know he was talking about my brothers. I have spent a whole day on the phone with the area agency on aging and have an appointment today to see what type of help they can get for mom and myself here. Am I in the right group to be asking questions and looking for a little emotional support. The fiancee is more on the analitical and logic side and not so much the emotional. Thats why I love him. I need the honesty not sugarcoated per say. Thanks again.

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@rmftucker

Having to tell my husband he could not drive anymore was one of the biggest worry my family had, but luckily we didn’t have to make that decision. I had been doing most of the driving when we went any distance or used “my” car. He had an older pickup that he drove around town and not more than 5 miles from home. Then he had a Dr appointment in April and when the subject of blacking out and falling several times came up, the Dr. very emphatically said he shouldn’t be driving and reminded him that he could black out while driving. We drove home and he has never mentioned driving again. The pickup sits in the yard and I have driven it a few times when we needed, but he has not protested to getting in the passenger side at all, and I am very thankful for that. We thank God everyday that the decision was made for him and he accepted it.

He still has his license, but had been having trouble with the vision test and needed affidavits from his eye Dr to get his license the past two years. I’m hoping he will accept the suggestion that he should just get a Photo ID in March when his current license will need to be renewed. I’m sure he couldn’t pass the drivers test as he doesn’t have enough mobility in his legs from several small strokes he has suffered in the past year.

I wish everyone a Merry Christmas and Happy New Year with family and friends.

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You’ll need identification for him. When his license expires you’ll need to get a state ID. You can get it at your local DMV. It looks much like your driver’s license.You might be able to do it on line. He may not need it very often, but it is also a safe guard for his wallet should he ever get separated from you or other caretakers who ever finds him would have some needed info from that ID..

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@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I’m tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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I understand your feelings. I am 3.5 years into the type of dementia called front lobe. Or more correctly. Frontotemporal lobe dementia. A simple outing to a new restaurant is a challenge as the crowd and / or noise level is enough to unsettle my LOML of 20 good yrs. His carotid stroke damaged the right frontal lobe portion of his brain which largely affects his personality. I pray for strength and peace, have said it many times, we are all in this together, in one way or another we are rowing the same boat. Peace and strength and hugs. We are here for you.

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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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I am new here but want to acknowledge all of the caregivers here, our struggles and strength. Prayers be with you all and take each day at a time sometimes each minute at a time . Just know you will get through it although some days it doesn’t seem like its possible. I find the more I make it through, the more confidence I have , and the stronger I feel about myself don’t get me wrong , because there are days I find myself thinking I am the weakest person in the world, and at my wits end……
I have been with a man for 12 yrs. He is 60 now, I am 54…I chose not to get married again as I was for 25 yrs and am widowed , My husband died in a car accident when he was 44 and I 42. He died on Thanksgiving in 2004 and was buried on my Birthday Dec 1.
The man I am with now is 520 lbs, and 6 foot 7…I am 150 lbs and 5;5..as you can probably guess this has caused some other problems with caregiving . He started acting weird, saying things to people like what a nice butt they had or they shouldn’t wear that in public, or talking about things he just shouldn’t be talking about in public and I asked the Dr about it because after a yr it also became aggressive, He would get so angry when I would try to put the mail on his table when he wanted to take a piece off the table, simple things like that . He would throw things, say mean things , show no empathy, talk about things from past continuously , and accuse me of stealing his pills or money when I don’t even have access to his money and don’t need his pills.
They did a CT and found he has atrophy in the temporal lobe (Intra orbital ) They have called it Picks disease and I am not sure what that means for the future. I already do everything, and I mean everything , he is on commode, can hardly walk, is morbidly obese, has A Fib, and Diabetic.( type 2 ) and addicted to food and to spending money we do not have. He just got out of the rehab place after 3 months and was in hospital for a mo before that ,
I am at my wits end as he doesn’t have a will or a POA , and refuses to get anything to help me as I believe he thinks in his paranoia that I will take his money or hurt him in some way which couldn’t be further from the truth….I am at a loss,
I am talking too his Dr about all this at his next visit and hoping the Dr will recommend his getting affairs in order. Thanks for letting me vent. I have no one else , and he has no family that can help me.

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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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We have the Roskamp Clinic here in Sarasota , Fl. Please if you can google them. They are doing cutting edge research on all forms of dementia (Alzheimer’s , Picks disease , FTD (frontotemporal Lobe Disorder).
We are all in this together. I have a stroke survivor. The debris hit the right front part of his brain. The personality changed from this damage very very quickly.
Know you are doing your personal best. Know that any help or information you can get is a lifeline. A sympathetic doctor or hospital social worker is heaven sent ! Take the best care you can, this is tough sledding ! We are all with you!!

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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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Thank you @ladycat, I appreciate any help I find here and Thank you so much for your support !

Liked by ladycat

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