Anyone have parents that had or currently have dementia?

[bthaunert]

My father is 71 years old and I've noticed over the past year or so that things just seem to be different. He has significant hearing loss, so always blamed things on his lack of hearing. He has started to do some weird things though, and it has me worried. Both of his parents also had alzheimer's, so it runs in the family. This past weekend I visited my parents in SC and something really caught me off guard. He has always been so particular about his lawn and took so much pride in it. You wouldn't find any pine straw in the lawn or weeds in his flower beds, was always green and mowed to perfection. When I got to their house last week, I noticed his lawn was probably the worst in the neighborhood. Hadn't been mowed in weeks, weeds everywhere, bags of mulch just sitting on the side of his house, his back patio covered in pine straw, bushes not trimmed, hasn't edged in months probably. He seems totally oblivious to it.

He's still a young guy, been retired from the banking world only a handful of years, supposed to be enjoying life living on a golf course in the Hilton Head area. He has an appointment with his PCP next week and my mom (bless her heart) is going with him and is going to demand that he gets an appointment with a neurologist. He's a hard headed guy and it's going to be tough as hell to get him to go, but she knows he has to.

Anyone go through or currently going through any of this with their parents? It hit me hard this past visit.

 

[Kybluedude]

So sorry. Yes my mom suffered with it over a few years. They call it the long goodbye. It’s tough. Hang in there my friend.

 

[IdaCat]

My mother-in-law was diagnosed with Lewy Body dementia. There is no definitive test for this condition until a postmortem autopsy of the brain can be performed, but based on symptom match, at this point, we're inclined to believe it.

She has slowly declined over the last year or so. She sometimes doesn't know her husband or other close family members. She gets lost in their little 2 bedroom condo. My FIL finds her sitting on the couch in the middle of the night because she can't find her way back to the bedroom and sometimes doesn't want to climb into bed with a "stranger". She also has hallucinations and sees people/things that aren't there. There are really no helpful treatment options.

She's late 70s and he's early 80s. Luckily, aside from hearing problems, he's is in excellent shape so he takes care of her. We've asked them to move up to Idaho with us (from Colorado) but they want to ride it out as long as possible. That means a frequent 10+ hour each way trip for my wife. She responds well to my wife's presence.

Anyway, it's only going to get worse and we expect a point where she will need 24/7 care. It's really sad and very difficult for my wife watching her mother fade away over time.

 

[UKRob 73]

I think so, but I can't remember for sure.

 

[_ukcat]

My mother in law had for about 10 years before she finally past. It is just awful to see this happen.

 

[LordEggForgotHisPassword_rivals]

My mom has an late onset delusion that she is being persecuted by people she doesn't know. Its weird. She is fine, even sharp, in every other respect. Manages her own affairs, can speak intelligently on current events and deep into history making appropriate analogy, etc. Yet, despite all evidence to the contrary, she believes some pretty wild ****. Its caused her to move a few times (Im sure the neighbors are like WTF?). Anyway...my MIL has Alzheimers and has done remarkably well with the diagnosis for a protracted period...to the point you wonder if it isn't something else all together (but she sees real deal specialists). Brain science is a big world.

 

[Big Blue Blair]

I'm really sorry to hear this OP.

Lost my mom a few months ago after her struggle with Alzheimers. We had suspected she had it for years, but she refused to seek treatment for it for quite some time. I think both she and my dad knew in a way, but didn't want to acknowledge it. When my dad passed away in March of 2016, things definitely took a turn for the worse. This disease can be very taxing on the family. I certainly wish you, your dad and the rest of your family the best.

 

[BlueRaider22]

My grandmother died from complications of what she called Anheuser's Disease.... It was pretty terrible. During the funeral, my mother asked my dad why he wasn't showing much grief/emotion. My dad said that "My mother has been dead for a long time now. She hasn't been able to recognize me or anyone else for yrs. I'm just happy that it's now over......for her....and for all of us...."

 

[BlueRaider22]

My mother-in-law was diagnosed with Lewy Body dementia. There is no definitive test for this condition until a postmortem autopsy of the brain can be performed, but based on symptom match, at this point, we're inclined to believe it.

She has slowly declined over the last year or so. She sometimes doesn't know her husband or other close family members. She gets lost in their little 2 bedroom condo. My FIL finds her sitting on the couch in the middle of the night because she can't find her way back to the bedroom and sometimes doesn't want to climb into bed with a "stranger". She also has hallucinations and sees people/things that aren't there. There are really no helpful treatment options.

She's late 70s and he's early 80s. Luckily, aside from hearing problems, he's is in excellent shape so he takes care of her. We've asked them to move up to Idaho with us (from Colorado) but they want to ride it out as long as possible. That means a frequent 10+ hour each way trip for my wife. She responds well to my wife's presence.

Anyway, it's only going to get worse and we expect a point where she will need 24/7 care. It's really sad and very difficult for my wife watching her mother fade away over time.

It's supposed to be worse than Alzheimer's........as far as symptoms and quickness of progression. Hang in there, it's likely to be rough.

 

[Mojocat_rivals48469]

My mother-in-law was diagnosed with Lewy Body dementia.

Same. She passed in 2015. Those last few years were rough to watch.

I recall a high school friend's father had Alzheimer's, and died, at 53. Even then, it seemed young. Now that just sounds crazy.

 

[numberonedad]

My wife's father has been suffering from it for about 4 years. He was a brilliant man, an attorney for 60 years and a photographic memory. Now he knows none of his kids or no one else. It's terribly hard on the family

 

[TexasTimCat]

My mom passed in August after a long battle with dementia - it is one of the most painful things i have had to witness.

Prayers to you and all involved - it is a process that affects the patient horribly but also the loved ones around them. My advice is to get as educated as you can and be prepared for the long journey.

 

[Wildcats1st]

My father is 71 years old and I've noticed over the past year or so that things just seem to be different. He has significant hearing loss, so always blamed things on his lack of hearing. He has started to do some weird things though, and it has me worried. Both of his parents also had alzheimer's, so it runs in the family. This past weekend I visited my parents in SC and something really caught me off guard. He has always been so particular about his lawn and took so much pride in it. You wouldn't find any pine straw in the lawn or weeds in his flower beds, was always green and mowed to perfection. When I got to their house last week, I noticed his lawn was probably the worst in the neighborhood. Hadn't been mowed in weeks, weeds everywhere, bags of mulch just sitting on the side of his house, his back patio covered in pine straw, bushes not trimmed, hasn't edged in months probably. He seems totally oblivious to it.

He's still a young guy, been retired from the banking world only a handful of years, supposed to be enjoying life living on a golf course in the Hilton Head area. He has an appointment with his PCP next week and my mom (bless her heart) is going with him and is going to demand that he gets an appointment with a neurologist. He's a hard headed guy and it's going to be tough as hell to get him to go, but she knows he has to.

Anyone go through or currently going through any of this with their parents? It hit me hard this past visit.

Go see a neuropsychologist in the meantime while waiting for a neurologist.

 

[Glenn's Take]

Dad passed away on Labor Day and that was even listed as the official cause of death. It started out a couple years ago when he got lost going to dialysis where he had been going 3 times a week for years. It got a lot worse when he fell and broke his hip and had to go under anesthesia. There will be good days and bad days but the hardest thing to deal with is that right now is as good as it will ever be. Dad got really bad at the end. He basically didn't sleep for almost a week because he was obsessing over this other woman living in with him and my mother. He had my mom split into 2 different people. His loving wife of 53 years and this mean evil ***** that told him what to do and when to do it. The last problem we had was when he freaked out at dialysis. We put him into a hospital thinking it was a urinary tract infection which will mess people with dementia up. They ran all of the tests and came to the conclusion that this was just the new normal. Sedating him every time he had dialysis isn't really an option so we made the decision to take him off and he was dead 5 days later. The only real piece of advise that I can offer is to pick your battles wisely because there are going to be battles. Their independence will pretty much be completely taken from them and while they do realize that is happening he got really pissed about it.

 

[bthaunert]

Thanks to everyone that shared. Knowing that it is likely heading in that direction, my brother, dad and I are planning our boys trip to Nashville for the SEC Tournament. My brother and I know why we are doing it, but my dad just thinks that it's a get together with his sons. I can't remember the last time just the 3 of us (I'm 43 and my brother is 46) spent more than a few hours together. It's going to be a blast!

 

[sg24_]

My wife's grandmother suffers from it. It is hard to watch. Her grandmother is one of the nicest people you would ever meet and now, well she doesn't know anyone.

She had a gradual fade with her memory. As I said she was one of the nicest ladies you could meet but the disease made her down right mean. It is gut wrenching to watch. Now she has been in a nursing home for several years. She doesn't speak and can't take care of herself. Her husband died of alzheimers which seemed to take him quicker than it is her with dementia.

But I know its tough OP. Thoughts are with you .

 

[JDHoss]

My mom died with Alzheimer's, passing away from it in 2015 at the age of 89 and battling it for nearly 4 years. It started out with losing/misplacing things like her keys, cell phone, credit/debit cards. Then I had to set her up on auto pay for her bills even though she protested, because she couldn't remember to pay them. She took Namenda and Xanax, which helped maybe a little with keeping her settled. I finally had to take her keys and vehicle, which was one of the hardest things I've ever had to do. She had worked for most of her life, made good money and was so independent. In the last 1.5 years, she went from a woman who was always up, bathed, dressed and had her clothes on just like she would if she was still working, to a woman who mostly slept, couldn't remember to bathe (I'm so grateful to my wife for taking care of that), eat or anything. She even got to where it didn't matter what was on TV. She loved baseball and the Braves, but she got to where she wouldn't have noticed if porn was on. I'm thankful that at the end, she still knew us. Otherwise, her waking hours were spent hallucinating and talking to people who were long dead.

 

[AustinTXCat]

My mother passed away 7 months ago from complications brought on by latter stage dementia. It is the most challenging disease you will ever encounter.

Mom had been a type-A individual and a super-neat freak her entire life. Her house was always immaculately well-kept. In 2004, at age 61, she suffered a stroke. She was also a heavy smoker, which we believe contributed much to her first stroke. She became withdrawn, but remained active. Her husband, my step-father, died in 2007 on the night before Thanksgiving. These early dementia signs began shortly thereafter. She refused treatment or any kind of assistance. Fortunately, my youngest brother lived across the street and could provide her with food and run errands.

By fall, 2015, little brother could no longer handle her. On Halloween, 2015, little brother brought her out here to Texas via air. Austin-Bergstrom Airport (ABIA) received a record 10 inches rainfall that day. Their flight was diverted to Houston, and they drove over from there. Mom stayed with us 3 weeks. @Willy4UK provided considerable assistance -- tremendous assistance -- on how we could deal with her. Personally speaking, I was scared to death she'd wander off and get hit by a car out on Interstate 35 here in Austin. She enjoyed wandering off.

By end of week one, she had assaulted my wife a couple times. Mom stayed awake during all hours of the night. My wife finally said enough is enough, so I took off from work and flew her back to FL. Another brother offered care. She stayed with middle brother and his wife for 7 months until his wife cracked from the stress of caregiving. He admitted her to an assisted living facility.

Mom resided at the $5,400/month assisted-living for 8 months, summer 2016 - March 2017. She experienced a few seizures during this time. During the last emergency room visit, she rose from her bed (was not strapped-down) and promptly fell, fracturing her head. I was notified and flew back to FL. We "pulled the plug", so to speak on doctor's recommendation, and removed her from the ventilator. She survived that event.

Mom survived the final 2 years of her life at Consolate Heathcare nursing home on Lake Parker, Lakeland, FL, with a feeding tube in her stomach and advanced stage dementia. I visited her as much as possible, usually twice yearly. She was sometimes coherent, other times not so. Last visit came in January, 2019. I caught the flu, and therefore could only spend a limited time with her. She died 6 weeks after my last visit. Her bedridden quality of life was poor.

The entire ordeal was a nightmare for everyone involved. We'd heard dementia patients often outlive their caregivers.

Good luck is all I can say. Very best of luck. They never return from this long goodbye. Use every favor and every connection you have to get through this. Stay strong.

 

[akaukswoosh]

So sorry. Yes my mom suffered with it over a few years. They call it the long goodbye. It’s tough. Hang in there my friend.

Had a father I had to care for with help but even the best people we found he’d get paranoid about. Very, very difficult for a child to deal with.

 

[bnewt]

my dad passed in 2017, at 85. he was diagnosed with Lewy Body. It was horrible for him. He was also blind the last 20 years of his life.
The blindness was bad enough, as my dad was a workaholic. He was miserable. One day my mom came home from the grocery and dad was basically in another life. He was holding conversations and having fights with his army buddies, old co-workers. It was to so painful to see him in that shape. He was hospitalized several times before he finally passed. His personality completely changed. My dad would do anything for anybody. Yet this disease changed him into a very mean, spiteful man. He would cuss my mom, accuse her of horrible things, even try to hurt her if she got too close. My mom is about 5'2" and weighs less than 100 lbs. I checked on both of them every day, on my way to work & on my way home. There were many nights that mom would call me late at night because dad was acting up. Being blind, he also suffered from sundowners. I miss my dad so much. I talk to him every day, but I was grateful to God when he passed. This disease had taken my dad months before he passed. I pray every day, that my mom doesn't suffer when her time comes. I also ask that my wife isn't burdened with me in the years to come.

 

[Stevo1951]

My mom has an late onset delusion that she is being persecuted by people she doesn't know. Its weird. She is fine, even sharp, in every other respect. Manages her own affairs, can speak intelligently on current events and deep into history making appropriate analogy, etc. Yet, despite all evidence to the contrary, she believes some pretty wild ****. Its caused her to move a few times (Im sure the neighbors are like WTF?). Anyway...my MIL has Alzheimers and has done remarkably well with the diagnosis for a protracted period...to the point you wonder if it isn't something else all together (but she sees real deal specialists). Brain science is a big world.

I would try a psychiatrist. Had a family member with theses symptoms and it turned out they needed medication and therapy. Straightened it out.

 

[wyomingcat]

My mother passed 12/29/18 after 6 years of dementia, its not a good road, She was 85. Her passing was a mixed blessing really, the last couple of years she recognized me ocasionaly as some one she saw regularly, but had no idea I was her son.

 

[Glenn's Take]

I just wanted to give you a few things you might want to think about as this goes along that aren't obvious.
1. Dad started wandering out at night and had to be brought home twice by the cops because he didn't know where he lived. We put alarms on the door and kept the bell in mom's room so she would know he was trying to leave.
2. You may want to check his credit cards. I don't know how computer savvy he may be but you can buy pretty much anything on the internet if you don't understand the concept of money. You may want to get him one with a really, really low limit so he can still have one but not high enough to do damage to their finances if he goes wild
3. As dumb as this one sounds, put parental controls on the TV. Dad bought $400 dollars worth of pay per view in a month.

The last thing I will say is that you very much want to pick your battles. If it doesn't matter just let it go because you are going to have enough battles that do matter.

Good luck.

 

[Surewhatever]

Online Con artists are super dangerous for people with dementia. Those Windows support con artists almost cleaned out a friend's dad. Bank account and credit cards. Happened twice. The dad forgot the first time and did it again. Limit access to bank accounts as well or at least have the banks aware and, if possible, escrow large charges for further approval.

 

[Glenn's Take]

Online Con artists are super dangerous for people with dementia. Those Windows support con artists almost cleaned out a friend's dad. Bank account and credit cards. Happened twice. The dad forgot the first time and did it again. Limit access to bank accounts as well or at least have the banks aware and, if possible, escrow large charges for further approval.

Good call on the online con artists. I heard him talking to one of them and once I got on the phone it was a short conversation.

 

[ThePunk]

As a Health Care Professional, I have seen countless families dealing with this. It is so hard to know what’s best for your loved ones and the Guilt associated with the upcoming choices. My Grandma begged us not to put her in a Memory Care Home. It got really difficult at the end. It puts a strain on every aspect of your life. Talk to your family and make sure EVERYONE is on the same page. DO NOT leave him alone in a Skilled Nursing Facility if it comes to that.

 

[rqa]

My father is 71 years old and I've noticed over the past year or so that things just seem to be different. He has significant hearing loss, so always blamed things on his lack of hearing. He has started to do some weird things though, and it has me worried. Both of his parents also had alzheimer's, so it runs in the family. This past weekend I visited my parents in SC and something really caught me off guard. He has always been so particular about his lawn and took so much pride in it. You wouldn't find any pine straw in the lawn or weeds in his flower beds, was always green and mowed to perfection. When I got to their house last week, I noticed his lawn was probably the worst in the neighborhood. Hadn't been mowed in weeks, weeds everywhere, bags of mulch just sitting on the side of his house, his back patio covered in pine straw, bushes not trimmed, hasn't edged in months probably. He seems totally oblivious to it.

He's still a young guy, been retired from the banking world only a handful of years, supposed to be enjoying life living on a golf course in the Hilton Head area. He has an appointment with his PCP next week and my mom (bless her heart) is going with him and is going to demand that he gets an appointment with a neurologist. He's a hard headed guy and it's going to be tough as hell to get him to go, but she knows he has to.

Anyone go through or currently going through any of this with their parents? It hit me hard this past visit.

Been there, done that. I'm praying for you and your family.

My dad had Alzheimer's...passed away at 85. Mother-in-law had it...she was only 72 when she passed away.

Mom had dementia... perhaps Alzheimer's but it was different from what I observed with dad and my MIL. Mom was 91 when she passed but her dementia seemed to come, and she was gone within 3 months. It was about a 3 year process with dad and MIL.

Me being in TN and my parents in KY the first thing I noticed that dad's voice and demeanor seemed to change at times when I would talk to him. I had gotten him UK-Vandy basketball tickets for a game in Nashville. After the game I wanted to introduce mom/dad to a good friend of mine in Nashville. Dad wasn't right...I couldn't put my finger on it but something just wasn't right. There were a few episodes before this that when the dots were connected let us know something was up.

One thing mom noticed was that dad continued to collect crossword puzzles but stopped working them. He religiously worked crossword puzzles for years and would never start a new one until he finished the one he was working. He usually had a stack of 5 or so that were waiting to be worked. By the time he stopped collecting them he had a stack of more than a year's worth.

Dad never talked a lot anyway (mom made up for it) but he stopped talking almost completely the last year of his life. He might say "yes" or "no" but it had no meaning. He also kept his eyes closed and would rarely open them. Mom was with him and had fallen asleep in her chair. She said she felt a presence and opened her eyes. Dad, wheelchair bound at this time is leaning over as close to her as he could get...and says, "I love you". It was the last words he would ever speak. He passed away about a week later.

Alzheimer's is as hard on the caretakers as the actual disease is to its victims. Make sure your mom seeks help. We were lucky that my sister lived close and was able to help mom immensely. Still, it was necessary to put dad in a memory care home after a while as he had started to fall regularly and we feared he would fall and take mom down with him. My father-in-law was near suicidal by the time my wife's mother died. We were almost certain we were going to have two funerals. Fortunately he didn't and is well today but the stress is no joke.

God Bless.

 

[rqa]

Online Con artists are super dangerous for people with dementia. Those Windows support con artists almost cleaned out a friend's dad. Bank account and credit cards. Happened twice. The dad forgot the first time and did it again. Limit access to bank accounts as well or at least have the banks aware and, if possible, escrow large charges for further approval.

Amen to this. Dad nearly got suckered a couple of times as well. Mom ended up having to change phone numbers because they would get so many calls.

 

[rqa]

As a Health Care Professional, I have seen countless families dealing with this. It is so hard to know what’s best for your loved ones and the Guilt associated with the upcoming choices. My Grandma begged us not to put her in a Memory Care Home. It got really difficult at the end. It puts a strain on every aspect of your life. Talk to your family and make sure EVERYONE is on the same page. DO NOT leave him alone in a Skilled Nursing Facility if it comes to that.

Dad has been gone for 14 years now so things may have changed but he spent the last year and a half at the Western Kentucky Veterans home in Hanson, Ky. I could not say enough good things about it. The staff, was great, the place was clean...as heartbreaking as it is to go into any nursing homes we didn't feel guilty about him being there. If anyone has a loved one in need of nursing/memory care and is a veteran and in the western Kentucky area I would highly recommend checking it out.

 

[cat_chaser]

You may wanna wait for an official diagnosis - because it might make this step a little easier - but as others have stated, it is very important to do what you can to protect the finances.....

.....Start looking into a POA if there isn’t one already.

If he gets an official diagnosis and you really want to think long term (7-10 years down the road), you may want to move assets out of their name. Dementia and other end of life care is ‘go broke’ type of money. If they have done well enough to not worry about that then that’s great. Or if they have a long term care policy.....again great.

Medicaid will kick in once all assets are exhausted, but you can put them in someone else’s name. However, Medicaid looks back 7 years (used to be 5) to see if that has happened and will still come after it. There may be some trusts you can utilize as well, but that’s something to discuss with a lawyer. As is all of this.

Hopefully he doesn’t get diagnosed and maybe hearing aids is a solution (hearing loss and dementia do have a correlation). But if he does have it, I’ll pray it’s a slow progression.

 

[maysvilleky]

My dad has it. He’s 80. It started out gradual. But when he forgot how to put his car in reverse and was revving the engine in the drive way we new it was time for meds. Then my mom passed away and he swore she had been dead for years even before we had the funeral. In 4 years its gotten to the point I think he knows we are related but can’t call anyone by name.

It’s a terrible disease. Worst than cancer IMO.

 

[bthaunert]

I appreciate all of the responses. He has an appointment with the neurologist in February. My mom said he actually agreed to it, which is great. Luckily (if you want to call it that), we went through this with both of my dad's parents, so they have long-term care insurance and other things in place to help ease the process a little on the financial side. It's heart breaking hearing some of your stories and I thank all of you for sharing.