The hard lessons of EOAD Alzheimer's caretaking

Crushed

I know that my road has been softer than many Alzheimer's caretakers.  My health is reasonably good, money is a minor issue and DW has never had a personality change to nasty or difficult. I may have had no shoes but I have met the people here who had no feet

But here is some accumulated "experience" of 11 years on this road.   I don't dare call it wisdom EOAD is a particular horror since the spouses are often working and or have dependent children.  You will find yourself resenting older dementia patients who had Normality at 60 or 70 or 80. Its an unproductive feeling but its real.

 
  1) EOAD is often undiagnosed or misdiagnosed due to physician reluctance and unfamiliarity.  In 2010 DW had failed the clock drawing test and various other cognitive tests.  Yet Neurologists called it "MCI of the amnesiac type"  In the long run since we had resources this did not hurt DW, but many people are harmed who cannot keep their jobs but are not yet eligible for Social security disability

2) EOAD is fertile grounds for quacks of all descriptions.  Symptomatic progression is not steady or regular and improvement in symptoms occur. This gives quacks a field day

3) For most people EOAD is a total financial disaster. Forgone income , cost of caretaking  and finally institutional care  are all killer expenses. Medicaid is your lifeboat and you have to learn how to use it. Demented people waste incredible amounts of money

4) Caretaking kills caretakers. It's that simple.  Trying to placate an angry demented person is enormously  stressful.  Lack of support and money problems makes it worse

 5) Alzheimer's patients can be dangerous to caretakers and others   Guns and cars are among the most dangerous of implements  

6) In most cases no one understands or cares or will really help.Family are sometimes the worst. Blended families are a special hazard

7) You must must must protect yourself legally from day one, if your LO will not cooperate you need an exit strategy  to convince them 

8)  You LO has to accept that you are in charge. Otherwise just tell them they can get themselves another caretaker Do not be a door mat.

9)   Do WHATEVER IT TAKES  to keep yourself alive and functioning.   Whatever !!!

10)  The friends who support you , including support groups and the folks here are PRICELESS

 

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jfkoc

Unfortunately by the time #8 rolled around it was too late to be rational. I had to find other excuses to step in.

LadyTexan

Crushed wrote:

You will find yourself resenting older dementia patients who had Normality at 60 or 70 or 80. Its an unproductive feeling but its real.

Lady Texan replied:

That's a great list Crushed. Thank you for sharing.

I haven't found myself resenting older dementia patients who had Normality at 60,70,80. Maybe that will come later. As I have mentioned before, I am a woman of faith. I think all humans have crosses to bear. Being a caregiver is my cross to bear. I don't question the timing of this cross. 

#  8 is tricky for me too. While I do make all the significant decisions in the household, I have no need to ensure my husband "accepts" that I am in charge. My husband's logic is impaired.  He may not understand the concept of in charge anymore. I do gently guide and assist as needed, other times I am more direct, but I usually am not bossy about it as long as DH is not in danger. I don't want to be the heavy because that makes cooperation so very very hard and could result in a catastrophic reaction from DH. Maybe I don't understand what you mean by being a doormat.

I am okay being the verbal punching bag. As long as I am not in physical danger I will chalk it up to the disease. That doesn't mean the insults and tantrums and pouting do not bother me. They often do. 

I want to reiterate what you said THE FOLKS HERE ARE PRICELESS!!

Iris L.

There is something that has always puzzled me.  Why don't couples have plans for decline in their older years?  Perhaps they think their older years will begin in their eighties.  

Another thing. Seventy pecent of PWDs have anosognosia.  That means that thirty percent do not.  When I thought I had Alzheimer's Disease, my thought was that I did not want to be a burden on my family.  So I am taking steps not to be a burden.  From reading these posts, I have come to realize more and more how destructive family caregiving can be, on both parties.  

I'm answering my own question now.  Perhaps the newly diagnosed non-agnosognosiac PWD and family members don't understand how destructive caregiving for a PWD will be.  Those who have managed to provide care at home had to have a strategy and make plans.  This thread is making me more determined not to become a burden.

Iris

Jeff86

I might note that other than items 1 and 3, much of the learned wisdom in this good list applies to AD generally and not only EO.  EO is financially devastating, and medically challenging to get diagnosed—very valid points.  

On item 8, I think the key is that caregivers must take control, whether or not the PWD agrees.

Item 6 is hugely dispiriting, when caregivers learn how alone they are.  I think it’s generally valid.

I’m glad this good list ends with nos. 9 and 10.  That’s our salvation as caregivers! 

Joe C.

As for #6 and blended families I guess I am fortunate, my stepdaughter could not be a more supportive and helpful confidant as I navigate this journey.

M1

Iris I completely agree with you, I am stunned that more folks aren't proactive about their own decline.  I am thinking ahead to what I will have to do when I have to sell our farm--probably not until after my partner dies--and I have these fantasies of starting over somewhere.  But even at a healthy 65, I realize it's not too soon to plan for not driving forever (no more living 13 miles from the grocery store), for downsizing significantly, for not making multiple moves in the future.  My "starting over" needs to be carefully thought out.  It will be the first time since going to college where I make a living decision not based on a significant other.  That was a good decision, and this needs to be another one, whenever it happens.

Keep It 100

#8 is a no-brainer and easy for me, but I was "in conrtol" before this crappy disease took my husband. He is completely in another world now, but very active--diminishing in stature but still has his athletic strength--and is often resistant to care from most of the staff at his facility. When I walk in some mornings the staff just look at me exhausted, say they tried, but could not get him changed and cleaned up. I just take his hand and say, come on babe, we're gonna shower and change you. An aide will accompany me as I bring him in his room and firmly but lovingly tell him I am going to undress him and get him in the shower, and like a lamb he just goes along with me. He'll brush his teeth for me and shave (with lots of guidance...)....It's still a struggle to manage the complete confusion and total absence of even an iota of an executive function, but I can firmly coax him along, and it gets done. 

When the staff sees me open the door to his MC facility, they are thrilled I am there. I am fully in charge of him...I come in and just get sh*t done, and they love it. But I imagine it is a personality-thing and a relationship-thing...we always were a great team, fully loving and trusting each other, and he always trusted and yielded to my leadership in our business and personal affairs. I am now reaping in the benefit of that trust--and for now, in this surreal and bizzare world, I have some control. That is, until I round the next corner, and then who knows....

Gig Harbor

#8 I have always told my husband that he has significant memory problems due to dementia but I stress that his heart and lungs are in great shape and that everybody has something. Now that he is forgetting more things I tell him that in our house I have the memory and that he has to trust me. He has been hearing that me has memory problems for four years so he totally believes it. When he doesn’t want to change clothes I tell him that in our house that is not an option. I explained that we both have to put on clean clothes and if he doesn’t want to he will have to move to a care facility. That sounds really harsh but when he hears that he changes clothes. When he is confused and obsessing about something I remind him that again it is a memory issue and that he has to trust me with everything. Luckily as he has gotten older -81- he has gotten lazier so he is perfectly ok with letting me do most everything. All of this may change as he gets farther into this disease but for now this is working. 

Crushed

On #8 "acceptance" simply means does not actively oppose.   As a friend said "Dogs accept that you are in charge.  You accept that Cats are in charge.  

The stress of continually overcoming aggressive opposition can kill you

Crushed

Victoria2020 wrote:

Crushed wrote:

8)  Your LO has to accept that you are in charge. Otherwise just tell them they can get themselves another caretaker Do not be a door mat.

 

Isn't this a pretty big to impossible ask of a person with an impaired brain? If they could understand , well they wouldn't have the issue.

a house plant accepts that you are in charge mental impairment per se is not the issue
 Active opposition imposes lethal stress. on a caretaker

jfkoc

The trick is to take control w/o meeting with active opposition. It takes patience and creativity.....lots of both.

Crushed

jfkoc wrote:

The trick is to take control w/o meeting with active opposition. It takes patience and creativity.....lots of both.

It also take a patient where patience and creativity WORK.  Otherwise its just nasty blaming of a caretaker for the situation.  Crappy families love that  "you just don't put in the effort !!  In particular there are situations which demand extra manpower or resources.  Or being bigger than the patient etc. Or not having children and a job etc.

French

  

#6 

I have very good friends an his brother and SIL who really care. It helps me. 

But yes blended family adds difficulties. I am not his children’s mother and his parents doesn’t really consider me. They even call his ex to have news (through her sons) because they don’t want to call me. Children would certainly have help their mother more than they do it with me.

#7 

yes I wouldn’t have accepted to continue if not protected. It’s important to do it when it is still possible ( when the LO still understand). But even if I think I have done what was necessary, I am not at peace. 

#8 

The most complicated. When I explain to my partner that I am tired « go to your parents » and you ? «  I can stay home « . After having visited a memory care «  I could also go to a campground it will be less expensive and I would prefer ». I think he really can’t imagine what I do for him. He thinks he needs no help.

I would add one point : the specificity of EOAD is that nothing is adapted to « young people » :

-France Alzheimer’s organise tea dance ! We will never go

-everything done for caregivers is in the afternoon... I will never go, I have to work and holidays are spent with my children 

-no (or few, 3 in France) memory care adapted to young people. You can have a derogation to go in those for people above 60. But you won’t have any subsidies, it begins at 60. Caregivers are condemned to these bad solutions and feel guilty or to continue to be a caregiver.

To me it’s the main issue. I would like to « save my health » but I really don’t know how to find a solution so that he will be cared in decent conditions. This moment will arrive soon when I won’t be able to continue. I estimate it will be at fall when we will return to our normal life (long days at my office, traveling for my work...). After this parenthesis of more than a year now, I think that the return to a normal life will put me in great difficulty. On an individual level, there has been some good in this pandemic . Caregiving was compatible with working.