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Caring for someone with dementia / Alzheimer's

Posted by @IndianaScott, Aug 30, 2016

Thanks for the great idea, @colleenyoung. I think a specific 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.

REPLY

@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 @clayton48 This is indeed a tough issue. It was one of the tougher early issues with my wife’s diminished mental capacity. We took her to Mayo and they had an electronic set up for driving testing. It was magnificent. Measured reaction times, signals, etc.

Her results were just slightly under acceptable and her doctor kindly told her she could not longer drive. Period. It saved a lot of anguish and arguing with family members. With my MIL, the family tried to do it all themselves and it took far too long. She came very close to injuring a pedestrian before they finally laid down the law and took the keys.

While the independence issue of driving is undoubtedly a difficult one, sadly it will not be the last nor the worst.

I wish you courage and strength,

This is exactly the way I approached it with my husband – concern for the safety of others, and doctor’s orders. In addition, since he no longer drives, whenever he wants to go somewhere, I drop everything and we go. I know how I would feel if I no longer had the freedom to jump in the car and go, so I try to give that back to him. I don’t get much done around the house, yard, etc., but he stays a bit more content.

Macbeth

@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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I would like to read the advice of others too. My sister is exactly the same. She wants to drive but I am only making excuses to be going where she wants to go and not facing her lack of concentration and slow reflexes.

@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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I found this information on the AAA website about driving and cognitive impairment:
– Driving & Dementia http://seniordriving.aaa.com/understanding-mind-body-changes/mind-cognition/driving-dementia/
– Professional Assessment http://seniordriving.aaa.com/evaluate-your-driving-ability/professional-assessment/

As Scott says, it may be a conversation that your doctor has directly with your husband in Clayton’s case or your sister in Sallysue’s case. I can imagine your suggesting that they get a clinical driving assessment would not be well accepted. But if their doctor “prescribed” the assessment, it would be more difficult to refute.

Driving — this has been our second biggest issue/hurdle to work through thus far. It is only natural since independence in life is something that we grow into and own as an adult and its loss is incredibly difficult. About 7 years ago I started doing most of our driving …. my husband could still drive at the time but it was simply easier for both of us if I drove when we went someplace together (or so we thought). When his doctor said he could no longer drive (three years ago) my husband blamed me — because I had “taken over” driving and that had caused him to lose his skills. In conversation we still deal with this loss on a regular basis although he has not driven in over a year — it has definitely become one of the markers in our journey that we must work through each time. It takes great patience but I only have to think about being told that I must stop driving to understand how frustrated and frightened my husband must feel. It is hard – I wish you all well in figuring out the best approach…

Liked by edna317

My husband was in the car business, a car lover and a mechanic, he had a commercial garage and taxi business and was a car collector with 30 vintage cars and trucks at one time, (that he rented to movies etc.) and he essentially drove me around. Although at the time I didn’t get it, he started making mistakes (probably related to the ALZ) around 7 years ago, including driving mistakes. He got a left turn ticket and I don’t remember the exact details but he failed to pay some fine so the government pulled his license as punishment for a year. I took over driving then, all our cars were always old, and I hated driving them. Then after a year for some reason he had to retake the drivers test to get his license back and he passed (but this was 4 years ago or so).

Something scary happened then, the neighbor told hubby to take his car into the garage (for repairs) and hubby “disappeared”, for hours I couldn’t reach him on his cell. It was late, dark, winter. The neighbor asked where he was. Finally he picked his cell, I said where are you, he said he was out of gas in Niagara Falls! What??? How could I find him? He was suppose to be at the garage or emission test center. It was when he got bad, (sundowning), and he was disoriented. I asked him to look at the street signs and tell me the name of the cross streets which he did. Then I googled it and found he was not in Niagara Falls at all but entirely opposite, way out in Pickering near the lake far east of Toronto. So he had driven for miles on the super highway in a daze. But something in his subconscious mind could still do it. I called the tow truck companies and they said they would not tow him that far. I got in the old car and went out to get him with a gas receptacle, then we had no choice but for him to follow me home in the neighbors car. Luckily we made it safely.

Then our very old car broke down and was scrapped. I got a new (used) one for myself and he NEVER DROVE AGAIN nor asked to, so I’m grateful. Something told him he shouldn’t drive, though generally he denies the ALZ. During the past 4 years we sold every one of the collector cars, and he doesn’t have the garage. Now there is only my car. Sometimes I say I’m going to get a brand new car and he says then you’ll give me your old one, right? I say yah but I might have to trade it in.

The doc asked if he drives and we said no, (though he still does have a license). So far she let it go. I think they make one take the test again at 80, that’ll be in three years, I doubt he’d pass again and we won’t bother taking it. He just carries the license for ID and dignity.

Thank you for all of your advice and input. I, too, am the sole caregiver and I am forced to make all decisions relative to his life and mine. I’m a strong person and I have worked in the legal field for 30 years. However, there are times I don’t want to be strong, I don’t want to be the decision maker and I want to be taken care of. I know that is unrealistic but you lose yourself when you are the caretaker. I have always been the dominant spouse, Clayton is sweet, kind and caring, my heart breaks to watch him struggle and become angry. We have been blessed that he has continued to have good cognition for three plus years and he can take are of himself while I work. I am 61 he is 69, I have to work another three years. The driving has been my biggest hurdle and I also believe it is one of those “milestones” that you have to deal with that he really does have ALZ. I don’t want him to have it, I want my husband back! I pray daily that God gives me grace and wisdom so I can manage the worsening symptoms in him and the anger I have for slowing losing my sweet, loving husband. I continue to pray for a cure, I know it won’t come in Clayton’s life time but I pray that our children and your, will not have to be faced with this terrible disease.

Merry Christmas and many prayers to all.

@clayton48, How well I can relate to your situation. We have been in this situation since we retired ten years ago but during the past two years, I have almost lost my husband completely. Like you, I was always the dominate one but now the load gets pretty heavy some days. I am having a good Christmas because my only child and only grandchild are visiting us for ten days. They both are trying to take care of Mom. My daughter insisted I go to the doc for a pretty major problem for which I am having an MRI tomorrow. Take a little advice from me and don’t ignore your pain or discomfort. I am in a situation now that I may be required to take my husband to a facility for a few weeks while I recuperate. Take care of yourself. Be angry – it’s OK. It’s much better than holding it all inside and then exploding someday – which you will. Life you, I pray for a cure even though it won’t come in time to help my hubby. Know there are others in your situation and we all understand those things – like praying for grace and wisdom. If I can help, please let me know. I’ve been living this life for several years. Merry Christmas and warm hugs.

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.

Liked by Debby - @tavi

@clayton48

Thank you for all of your advice and input. I, too, am the sole caregiver and I am forced to make all decisions relative to his life and mine. I’m a strong person and I have worked in the legal field for 30 years. However, there are times I don’t want to be strong, I don’t want to be the decision maker and I want to be taken care of. I know that is unrealistic but you lose yourself when you are the caretaker. I have always been the dominant spouse, Clayton is sweet, kind and caring, my heart breaks to watch him struggle and become angry. We have been blessed that he has continued to have good cognition for three plus years and he can take are of himself while I work. I am 61 he is 69, I have to work another three years. The driving has been my biggest hurdle and I also believe it is one of those “milestones” that you have to deal with that he really does have ALZ. I don’t want him to have it, I want my husband back! I pray daily that God gives me grace and wisdom so I can manage the worsening symptoms in him and the anger I have for slowing losing my sweet, loving husband. I continue to pray for a cure, I know it won’t come in Clayton’s life time but I pray that our children and your, will not have to be faced with this terrible disease.

Merry Christmas and many prayers to all.

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I am right there with you in every aspect of this post – hating to lose my sweet husband by degrees, missing his old self, missing being a partner, rather than a caretaker, hating the disease, praying for a cure. Only, I HAD to stop working five years ahead of time, due to a surgery that left him much worse, and unable to be left alone – now having to pay for individual insurance, no longer paying into pension, etc…oh well, you gotta do what you gotta do, and pray – if you can still believe – for things to work out o.k.

Thoughts and prayers,

Macbeth

Liked by Debby - @tavi

@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 IndianaScott:
Thanks for the tip on driving. I will be facing this issue in February and his children do not want him driving; however, they do not live here
and will not see them until April/May when we make a trip to Mayo. Was the test given at Mayo an expensive one? Trying to keep
costs down as we all are with medical, trust you are doing well and will have a good New Year!! OZYS

@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 @ozys Sorry, but I no longer recall the cost of the test. I am really sorry, but it was done as one test among dozens over four days.
Wish I could remember…and wishing you and yours a good New Year as well!

@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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IndianaScott: Thanks so much for your reply, it would probably be worth whatever we have to pay to save some grief for both of us.
ozys.

@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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For months I have been following this chat room.However never had time to respond due to either no time or energy as I adjusted to my husband’s diagnosis of Alzheimer’s plus spatial dementia. Four years ago he was diagnosed but there was no help from our insurance group. Finally I contacted the VA and received the help we needed.It has been a merry go round as he one day didn’t know that I was his wife and began flirting with me and started telling me about his back ground and asking me about mine. Finally decided he loved me but since he was married and hadn’t seen his wife in many months, he felt that he was cheating on her. My husband is 80 and we have been married for 56 years.We have a long mirrored wall in our living room and mirrors on the back splash area on the kitchen. It is all one room so the mirrors pick us up on various angles and he thinks there are four or six or even eight of us in the room. Also the sliding closet doors in the two bedrooms are mirrored.Covering the mirrors are not as option so I live with this daily.I have some friends who are my support system. I also have my husband in adult day care two days a week. Our only child lives in California and we live in Honolulu so my support from him is over the phone. He is very helpful and will try to fly to be with us every three months. We just returned from spending Christmas with him and his family and I feel this will be our last flight. My husbsnd just has such a difficult time with the flight even with medication.I want to share how I solved the driving problem with my father who had Alzheimers and refused to stop driving. Watching him drive one day when I was driving a car next to his, I realized his license must be pulled and sent a letter to the department of motor vehicles. By mail they requested he come into the office for testing and he failed. Of couse he wasn’t happy and refused to give us his key. I called the local Toyota dealership and it was suggested we have a kill switch installed. It was installed on the lower area of the steering wheel shaft. A special key had to be inserted before the ignition key was inserted  Then the engine would start. Without the special key, the engine would not start. So his key didn’t work and we told him there must be a problem with the car. He never saw us insert the special key and our fear of him driving was finished.Toyota didn’t do this type of work and suggested a place that installed radios.I hope this info will be of help to someone.Bless all of you who share your burdens. Now I know I am not the only one living in this cloud.

@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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Hello @foxylady42 Nice to e-meet you here! YES indeed you are not alone, although caregiving is a very isolating endeavor! That was one of the most difficult challenges for me. Being a people person cutting off so much human interaction was tough. Still trying to get back into pre-caregiving style, but after 14 years it may be a lost cause 🙂

That is a great suggestion on the driving. Wish I had thought of that! It is quite a problem to overcome and this was a good one.

On the mirror issue, at least on smaller ones, I have seen folks put colored Saran wrap over them to mask the reflections. I did it in our bathroom and it really helped.

I recall when my wife could no long travel, either by air or car. Simply became too stressful and would increase her anxiety far too much.

I wish you strength and courage! Know we fellow caregivers are here!

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