Serious Subject.....

[brad1]

Hi all. I spent the weekend with my Mom. She lives about 270 miles away. My Dad passed away about 4 years ago. She doesn't want to move. My brother lives in the same town as I do.

And we are pretty sure she is starting to show early signs of Dementia/Alzheimer's. 

It is so hard to for me deal with this. I love her so much, and I feel like something really bad is going to happen to her is she keeps seemingly losing touch with her former self.

The reason I bring this up at this forum? I was wondering if anyone could give me the names of any authors that have written on the subject that you think would be beneficial.  There are a ton of books on the subject, so I just thought I would ask you guys around here. Perhaps you have gone through something similar with a loved one. And maybe some advice.

Thanks a lot for reading and your help.

Brad

[merciful-evans]

I dont have any reading matter I can suggest Brad. I have however been through this with my mother, and was here carer for some years before she needed specialised care.

I cannot and will not sugar coat anything for you. This is a dreadful illness and its very hard to deal with. I had little in the way of family help. I suggest discussing this with your brother and any other family. Its better to be coordinated with your approach to this. Its better for your mother and its much better for the rest of you too. There are drugs which can slow down the onset of this. If she has no historic/pre-existing digestive disorders, she should be ok to use them. 

Even if Power of Attorney is not needed yet, prepare the way. It can take time. Her doctor (and maybe legal adviser) should be consulted about when it the time comes. 

I'll return with further suggestions later. Meanwhile, gather your thoughts and discuss options. Good luck.

[brad1]

3 minutes ago, merciful-evans said:

I dont have any reading matter I can suggest Brad. I have however been through this with my mother, and was here carer for some years before she needed specialised care.

I cannot and will not sugar coat anything for you. This is a dreadful illness and its very hard to deal with. I had little in the way of family help. I suggest discussing this with your brother and any other family. Its better to be coordinated with your approach to this. Its better for your mother and its much better for the rest of you too. There are drugs which can slow down the onset of this. If she has no historic/pre-existing digestive disorders, she should be ok to use them. 

Even if Power of Attorney is not needed yet, prepare the way. It can take time. Her doctor (and maybe legal adviser) should be consulted about when it the time comes. 

I'll return with further suggestions later. Meanwhile, gather your thoughts and discuss options. Good luck.

Thank you so much for your advice. 

We just recently got her to sign power of attorney over to my brother and I. 

I forgot to mention my Mom is 83 years old. 

Thanks again ME. 🙂

[kidblast]

I do not know of any books, so I am sorry Brad that I can't help there. 

I do know and understand though.  This is very hard for family members to sort out.  My Dad was diagnosed in 1994.  It did not take long before my mom could not care for him any more. 

Where your mom lives alone, and that far away from you  (if that is the case) you certainly have cause to be concerned. 

I lived only a few miles away from where I grew up and mom and dad still lived at the time, but it still wasn't adequate enough to help.  He quickly went from one phase to the next, and 24/7 care was the only real answer within about 2 years.  

The biggest problem is usually denial.  they feel fine, and just believe they are getting "forgetful" with age.  There's no "test" to confirm, but there are of course evaluations that can be done to get some answers.  These are usually answers the family just does not want to hear unfortunately.

The thing with this disease is it effects the spouse, the sons/daughters/grandkids much more than it effects the person with the illness.  Most of the time, they are totally oblivious to any of what is happening to them.   

The best advice I can offer is try to get her to get checked out as soon as possible,  there are medications available that can slow the progress.  Perhaps that is an avenue for you to pursue.

 

[kidblast]

BTW. I read ME's reply, he absolutely mentions things that while I wasn't sure you were ready to think about yet,  are realities that eventually will come forward if this is really going on.

In the USA, Medicare/Medicade has a cool off period where any moves done to properties, and assets are still eligible and have to be spent down until the insurances that pay for long term care can be brought into focus.  I believe in many states is 5 years . They keep pushing that out though.  So that is another issue to consider. There are attorneys that specialize Geriatric  law that can help you understand the play book.   I will just say, it's not going to seem all that equitable, and as ME says, your family needs to understand these things so that everyone is on the same page when decisions have to be made.

I am sorry you have to deal with this.  It's one of those things that I would not wish on anyone.

Edited July 6, 2020 by kidblast

[brad1]

7 minutes ago, kidblast said:

I do not know of any books, so I am sorry Brad that I can't help there. 

I do know and understand though.  This is very hard for family members to sort out.  My Dad was diagnosed in 1994.  It did not take long before my mom could not care for him any more. 

Where your mom lives alone, and that far away from you  (if that is the case) you certainly have cause to be concerned. 

I lived only a few miles away from where I grew up and mom and dad still lived at the time, but it still wasn't adequate enough to help.  He quickly went from one phase to the next, and 24/7 care was the only real answer within about 2 years.  

The biggest problem is usually denial.  they feel fine, and just believe they are getting "forgetful" with age.  There's no "test" to confirm, but there are of course evaluations that can be done to get some answers.  These are usually answers the family just does not want to hear unfortunately.

The thing with this disease is it effects the spouse, the sons/daughters/grandkids much more than it effects the person with the illness.  Most of the time, they are totally oblivious to any of what is happening to them.   

The best advice I can offer is try to get her to get checked out as soon as possible,  there are medications available that can slow the progress.  Perhaps that is an avenue for you to pursue.

 

Thanks Kid. And thanks for sharing your experience.  I really appreciate it. 

Yes, the denial thing is in full power. And worse she seems to get, the more she denies it and thinks I am the one with the problem. She won't get tested. I've been trying for 2 years.  But get this.  She tells this weekend that she recently was tested. I say great let me see the results. She then tells she threw them away.  She seems to lie constantly.  But I think she believes it. 

 

Edited July 6, 2020 by brad1

[Rabs]

Hey Brad..

Cant recommend any reading as well I haven't gone that far but we are facing the same thing.

My dad passed away about a year and  a half ago after a long fight with cancer..  The whole thing was really really bad.. When it started we took my mum to whats called a Memory Clinic. They basically assess people who are showing signs of dementia.. She went and had a load of scans and blood tests too.. And what they said (and this was about three and a half year ago) was that she was showing the first sings of dementia. It wasnt that bad but she needed to exercise her body and mind and avoid stress or it was going to get worse and the following two years was nothing but stress as we watched my father slowly die.

These days she is still at the family home and also refuses to move. Her memory just gets worse and worse. We get phone calls from her sometimes like four times a day when she asks the exact same questions. She refuses to go anywhere or do anything (and this was before covid), she doesnt eat properly really or look after herself in that way at all..  

And the sad thing is there is nothing we can do about it. Until the time comes where she is a danger to herself and cant live alone any more we just have to do what she wants.. And the last time she went to the memory clinic (at the beginning of the year) she told the nurse that she doesn't want to go on any more  😞  (she still refuses to talk to anyone about how she feels after my fathers passing).

As suggested above.. Get power of attorney sorted out now while she is still able to do so legally.  I know its horrible but sadly when things get like this you have to act rationally and do whats best, even if its hard. We also had to force my mum to stop driving which I thought she would fight but didnt. I sometimes got phone calls from her crying cos she had parked her car somewhere and forgotten where she parked... Once about a year ago I went to the bank with her to sort some stuff out. I had to pop out to put some money on the meter just before we ended the meeting. When I got back to the bank she had disappeared.. I cant tell you the panic that came after, I did find her after about ten minutes of running about thinking the worst.... 

So yes.. Sadly I cant offer any more than my own experience, which has been terrible, and sadly I know its only going to get worse.

The biggest blessing really is that me and one of my sisters both live quite locally so we pop over and call her as much as we can. And thats about all you can do, what ever your best is. This whole lockdown thing has obviously made things much worse but as I say, we are just doing the best we can.

[kidblast]

13 minutes ago, brad1 said:

Thanks Kid. And thanks for sharing your experience.  I really appreciate it. 

Yes, the denial thing is in full power. And worse she seems to get, the she denies it and thinks I am the one with the problem. She won't get tested. I've been trying for 2 years.  But get this.  She tells this weekend that she recently was tested. I say great let me see the results. She then tells she threw them away.  She seems to lie constantly.  But I think she believes it. 

 

My dad  was an engineer,  very intelligent and and very pragmatic.

We were closing the pool one Saturday afternoon after labor day in 94,  as we were wrapping things up he says to me  "ya know Ray, next year you're probably going to be doing this yourself.."  I asked what did he mean by that?   That's when he told me.  He knew, he was waiting for the test results from his  neurologists  before he let any of us know.

My sons Father in-law on the other hand is in denial.  He will not get tested.   I've become attuned to what a person with dementia acts like/looks like.  I can see it a mile away.  I've seen it with Dennis for a while now,  I asked his wife around Christmas time last year if there was something going on with him..   She just said "OMG,  you can see?"    He puts up a good show, but he doesn't even know where he is half the time.  He's such a good man, it breaks my heart to see it.

I don't know how you approach this with your mom if she's not ready to deal with it yet.   Think of how scary this is for "them" to know what might be happening.   It's awful ,really.

Brad, man this is tuff.   It may require a meeting with everyone that matters in your family and a heart to heart discussion with your mom with everyone there. The legal stuff is important, but, you gotta go one step at a time,  her well being is #1....   Not sure how big your family is but remember, there's power in numbers...   All the best man

 

/Ray

Edited July 6, 2020 by kidblast

[Retired]

Hi Brad, same here on the books that I know not of,  I have been around several people with this disease. Eventually they are forced to go into a home so they can have 24 hour care.  It depends on the stages they are in also. At first, they forget things, We all go through that it seems. My Aunt from Colorado went to my Moms home to live and she had Dementia. Here was the process Alice went through.  Getting worse in stages, She started forgetting who you were, Then you might have had to tell her several times who you were in a conversation.  As it got worse, she would wonder around outside, She would not remember where she lived.  That can be dangerous. So doors to the house had to have child proof locks on so she couldn't get out. Once, my mom took her too Little Kings and while she was ordering, Alice, disappeared behind her. She wasn't found outside and mom looked for her in the restrooms, She was found in the kitchen urinating in a trashcan  with 2 employees watching surprised. So yes, It can get bad. They had to call police once to find her outside, and she was in the back yard of the neighbors pulling weeds. That took hours to find her with relatives all out in cars searching for her. Then eventually, she forgot how to walk,  She could but looked very terrible trying to do it.  So as the disease, progresses, so does the patient.  They eventually forget how to swallow and usually choke and die.  The neighbor across the street has it also and he is in a home now. I used to keep an eye on him when he took walks around the block. Usually, when they are forgetting who you are all the time, they aren't so bad to be put in a home and they may refuse to do so but the disease will steadily grow worse at a rapid rate. It might take a year or 2 or less. Try and have them concentrate and do mind games to help slow it down may help? 

[rct]

I'm sorry to hear this Brad.  My brother and I cared for my mom for the last 3 years or so of her life.  There are no books for people actually doing this, those books are for weekend book clubs and morbid, curious housewives.  

Brace yourself for the lies, half-truths, non-truths, and pure fiction fantasies that you will be hearing.  It all comes down to one thing that they won't tell you.  That is that any acknowledgement of this will dramatically change everything immediately, and I can't say I blame them for not wanting to do that.  My mom fought to her last day, stood on the front porch and smoked a cigarette telling me how good she felt today, died about three hours later.

Also when they tell you to take her to the senior center/aging clinic for cognitive testing so they can evaluate her mental state as a reason to get her round the clock care, prepare for her to pass with flying colors.  They all do.  It's how it is.

Good luck brutha.  It is a tough road to travel and we can only hope for the best terrain for you to navigate.

rct

[Retired]

Yep. It's like everyone said here and at first, they are in denial.  My wife's mom was getting it also and would not go to the doctor or hospital.  Eventually, her step dad just took her in anyway and she was mad.  She had a worse problem though she didn't know about, and that actually killed her in about 2 months.  

[uncle fester]

 Brad, my thoughts are with you.  Peace and luck to you, your mom, your brother and any others involved.  Your good for stepping up...

[brad1]

1 hour ago, Retired said:

Hi Brad, same here on the books that I know not of,  I have been around several people with this disease. Eventually they are forced to go into a home so they can have 24 hour care.  It depends on the stages they are in also. At first, they forget things, We all go through that it seems. My Aunt from Colorado went to my Moms home to live and she had Dementia. Here was the process Alice went through.  Getting worse in stages, She started forgetting who you were, Then you might have had to tell her several times who you were in a conversation.  As it got worse, she would wonder around outside, She would not remember where she lived.  That can be dangerous. So doors to the house had to have child proof locks on so she couldn't get out. Once, my mom took her too Little Kings and while she was ordering, Alice, disappeared behind her. She wasn't found outside and mom looked for her in the restrooms, She was found in the kitchen urinating in a trashcan  with 2 employees watching surprised. So yes, It can get bad. They had to call police once to find her outside, and she was in the back yard of the neighbors pulling weeds. That took hours to find her with relatives all out in cars searching for her. Then eventually, she forgot how to walk,  She could but looked very terrible trying to do it.  So as the disease, progresses, so does the patient.  They eventually forget how to swallow and usually choke and die.  The neighbor across the street has it also and he is in a home now. I used to keep an eye on him when he took walks around the block. Usually, when they are forgetting who you are all the time, they aren't so bad to be put in a home and they may refuse to do so but the disease will steadily grow worse at a rapid rate. It might take a year or 2 or less. Try and have them concentrate and do mind games to help slow it down may help? 

Thank you for your insight. I really appreciate it. 

[brad1]

1 hour ago, rct said:

I'm sorry to hear this Brad.  My brother and I cared for my mom for the last 3 years or so of her life.  There are no books for people actually doing this, those books are for weekend book clubs and morbid, curious housewives.  

Brace yourself for the lies, half-truths, non-truths, and pure fiction fantasies that you will be hearing.  It all comes down to one thing that they won't tell you.  That is that any acknowledgement of this will dramatically change everything immediately, and I can't say I blame them for not wanting to do that.  My mom fought to her last day, stood on the front porch and smoked a cigarette telling me how good she felt today, died about three hours later.

Also when they tell you to take her to the senior center/aging clinic for cognitive testing so they can evaluate her mental state as a reason to get her round the clock care, prepare for her to pass with flying colors.  They all do.  It's how it is.

Good luck brutha.  It is a tough road to travel and we can only hope for the best terrain for you to navigate.

rct

Thank you RCT; for giving me your experience with your Mom, and the truth.

[brad1]

5 minutes ago, uncle fester said:

 Brad, my thoughts are with you.  Peace and luck to you, your mom, your brother and any others involved.  Your good for stepping up...

Thanks Uncle! That does help.

['Scales]

Sorry for your troubles, no easy answers it seems but some great advice from all.

when my old man died last year I had realised he had early signs and was relieved for him that he didn't need to go any further down that path (and given the bushfires and Covid pandemic since then, even more relieved) but in selling up the property and moving mum into a retirement village (at age 81 years old) I learned something that may be useful....some retirement villages also have assisted living/nursing home/call it what you will facilities within the same complex, as is the case for mum....and when you cannot manage in your villa or apartment unit you can move into the full care facility without the paperwork and waiting lists...your financials just shift with you. If and when she ever needs to go there, it's straightforward.

i mention that because as well as making life easier for you as Carer and power of financial attorney, it's easier for the mum/dad  they are still in relatively familiar surroundings among other residents and staff who know and can easily visit them and maintain some consistency. 

[Rabs]

Ohh and if it wasnt obvious, and in reading my post back maybe its not...

I am sorry to hear about it too.. Its always hard and I wish you and your family the best..

I will say that talking about it does help. I am sure you have good friends and family around you. When you need too, lean on them, talk to them, get it out.

And also that everyone is different and the effects of any illness will vary from person too person. Always a good mantra for when things go bad.. Prepare for the worst but hope for the best. Maybe it will just never get that bad. No one knows really, its why even though dementia is bad some people can get away lighter than others. There is no certain path here.

[SteveFord]

Oy, sorry to hear that.

No books or any real advice other than try not to take anything personally.  Easier said than done but that is what you have to do.

[brad1]

1 hour ago, Rabs said:

Ohh and if it wasnt obvious, and in reading my post back maybe its not...

I am sorry to hear about it too.. Its always hard and I wish you and your family the best..

I will say that talking about it does help. I am sure you have good friends and family around you. When you need too, lean on them, talk to them, get it out.

And also that everyone is different and the effects of any illness will vary from person too person. Always a good mantra for when things go bad.. Prepare for the worst but hope for the best. Maybe it will just never get that bad. No one knows really, its why even though dementia is bad some people can get away lighter than others. There is no certain path here.

Thank you! I meant to respond to your first post and absolutely forgot too. Thanks for letting me know your experiences and the good advice Rabs.  I think I remember you talking about your Mom before.  Your words help a lot.  Thanks so much!

[kelly campbell]

One of the most horrific diseases for a family to have to deal with...So sorry to hear of your situation Brad..best of everything to you and your family..

Edited July 7, 2020 by kelly campbell

[brad1]

I want to thank everyone who has replied on this thread. Your experiences are very sad, and I feel  empathy. Your advice is greatly appreciated and helps so very much.

I keep hearing the phrase "we're in this together", about covid 19. 

But I think it is things like this; the shared emotional experience of taking care of an aging parent, that really make us feel like "we are in this together."

Hearing what you all have gone through gives me an idea of what's ahead.  And some hope for the near future.

thanks again

 

Edited July 7, 2020 by brad1

[sparquelito]

Brad, 

I watched some videos of Glen Campbell and his family, filmed during his final performances, and how it was for his grown kids during his decline. 

He would have a lot of confusion, and forgot nearly everything leading up to an actual song, but once the song began, he would be on auto-pilot. 
Sharp, in the zone, on time, and on tempo. 

And then two songs later, he would try to introduce that same song again, and his daughter would gently say, "Dad, we already did that one," and they would prod him toward the next song. And he would KILL it.  He was so good. 

It's tragic, and my prayers go out to you and your family, good sir. 
My mom passed with a fine mind but a worn-out body. 
I don't know if the inverse would be any better. I suspect not. 

Look up those Glen Campbell videos, sir. 
They are really good. 

😪

 

[kidblast]

1 minute ago, brad1 said:

I want to thank everyone who has replied on this thread. Your experiences are very sad, and I feel  empathy. Your advice is greatly appreciated and helps so very much.

I keep hearing the phrase "we're in this together", about covid 19. 

But I think it is things like this; the shared emotional experience of taking care of an aging parent, that really make us feel like "we are in this together."

Hearing what you all have gone through gives me an idea of what's ahead.  And some hope for the near future.

thanks again

 

Brad everyone who walks this path has a different story to tell,  that's just the way it is.  at the end of the day, knowing you were there, will be something you will never have any regrets over

My dad went into long term care on December 23rd in 1996..   (two weeks before that day, my brother in-law, who was also a band mate and one of my best buds, died from small intensine cancer at 34 yrs old. leaving a wife and two young kids, my son was just released from the hospital, at 16 recovering from an infection that settled on his liver, that they thought may also have been cancerous..  it wasn't.. but it was still scary as hell) 

I was already in a "place"  that was not all that great.   

My mom and I went to the nursing home that day at around 4 pm once the intake was done..   she had a little Christmas tree she bought at CVS on the way there..  In the elevator going up to his room is,  that moment is something I don't think I'll ever forget...   thinking  Geezus.. how much worse can things get?   ha !  I found out eventually,, a lot worse..

But I was where I had to be..  just do what you can to be where you need to be as long as you can,,, remember...  you can't control any of this..  

[jaxson50]

Brad,

You have received some very good advice and insight from other members,  I only offer support when you need it.

May God's Peace shine upon you and fill you with strength and compassion  ,it was the only thing that kept us sane., .that a gin martinis,  lot of them .

Put bell above door so you know when they leave their rooms. Because they forgot they already cooked dinner five time, and they leave the burner on, then they figure out how to use cotton balls to muffle the bell. 

Sheriff wakes you at four am cause they found her walking with  her suit case through traffic on the 10 on her way to Oregon..