Just found out my father’s diagnosis

Eparedez

Hey …. My father has been having some cognitive issues for a few years now, but tonight he told me he has been diagnosed with Alz. He didn’t give me much information because I don’t think he wanted to tell me at Thanksgiving dinner so I don’t know much right now. 

I currently live across the country because my husband is stationed out there and I just am feeling so guilty about living so far away and not being able to help… I’m in town for another 4 days and will get to spend some time with him before I go back home. 

I have pretty debilitating death anxiety and I am struggling navigating all of this. I would love  any tips or words of advice on how I can best support my father through this.

M1

Welcome to the forum.  I'm so sorry that your learning of a formal diagnosis fell on a holiday, that's never easy--but it sounds like you have suspected it for a while.  Let us know as you learn more.  This is an excellent place for support and lots of practical advice.

Jo C.

Hello Eparedez and a very warm welcome to you; I am sorry for what is happening and can imagine how heartachiingly stunning this news must have been.  We are all here in support of one another and that now includes you too.   Being here will offer support and lots of experiential wisdom; that being said, it is important to know that every single person with dementia is different from the next.  As the saying goes; "If you have seen one person with dementia; well, you have seen one person with dementia."

This Message Board is a great place to come and share and to get support, but do know that a good number of people who come here have Loved Ones (LOs) with significant problem issues that your father may never, ever develop.  Having a dementia diagnosis does not mean that a person will have all the same problem issues; that is just not so.

My mother had a behavioral variant of FrontoTemporal Dementia; it was quite a challenge as it advanced; her illness was about eight years duration.   My step-dad was diagnosed with Alzheimer's Disease.  It affected his short term memory and reasoning as time went on; yet he lived for 20 years after diagnosis when he died of a different cause.  The entire time until the end, he lived in his own small home with a wonderful care aide; he knew who we all were; he knew who he was and where he was; he was able to feed himself; he stayed continent; he could dress himself if clothes were set out for him; he could shower with only standby assistance and he could feed himself.  He was a content individual who simply liked to sit in his recliner and watch favorite TV programs and "read" his newspaper.  Two very different individuals and two very different courses of disease.

The Alzheimer's Assn. has a 24 Hour 365 day a year Helpline that can be reached at, (800) 272-3900.  If you call; ask to be transferred to a Care Consultant.  There is no fee for this service.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They are very kindly supportive, have much information and can often assist us with our problem solving.

Probably, the most helpful writing is, "Understanding The Dementia Experience," by Jennifer Ghent-Fuller.  This can be found online and printed off to keep for future use.  This writing explains the disease and the dynamics as it advances and also, explains the why of some things that happen.  I think you will find it worthwhile reading.

I would put the link to the writing here, but when I do that, it hyperextends the Post clear out into the margins, so just Google the pdf version of the title and author and the pdf version will come up.

Please let us know how you are and how things are going, we truly do care.

J.

sandwichone123

Welcome Eparedez,

I don't know what kind of treatment you are already getting for your anxiety, but this would be a very good time to find a good prescribing therapist to work with if you're not already. One of the golden rules of Alzheimer's is that care for the caregiver (even if long-distance) is the best care for the PWD (person with dementia).

It may be that the information you got yesterday is the bulk of information that will be available from your father. My dh knows what he has (many don't), but cannot communicate more specifically than "this...thing," or such. Many others don't know they are ill or stop understanding that after a period of time.

Emily 123

I'm so sorry.  Sometimes these conversations are easier to have in person.  A good start is to talk to your dad about his healthcare wishes, what his financial plans are, and to see if he has thought about who will need to be his power of attorney (POA).  Part of the disease can result in the person being unable to carry out or even formulate a plan. You might have to have a hand in setting this up.  A certified elderlaw (CELA) would be able to talk with your dad about planning, as well as get the paperwork started.  It might be helpful to him to get a meeting set up with one and you participate via Zoom.  https://www.elderlawanswers.com   

Also while you're there do a touchbase about what he can still do--are his bills paid?  Can he go to auropay on more things?  Is he still keeping any prescriptions filled and is he taking those correctly?  Is he eating enough? Doing household chores? Taking care of pets? At some point his ability to live independently without help will decline. Now is a good time to think about what that will look like for him.   Assisted living with eventual memory care?  in home help? Group home?  If he has online accounts can he share the password with you?  Would he sign off on allowing his medical information to be shared with you? Browse the forums as there are many good past threads. Check out the local resources here, and see if he might want to participate in a support group.

I found this helpful in understanding what changes were coming our way:

http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

https://tamcummings.com/stages-of-dementia/

Eparedez

M1 wrote:

Welcome to the forum.  I'm so sorry that your learning of a formal diagnosis fell on a holiday, that's never easy--but it sounds like you have suspected it for a while.  Let us know as you learn more.  This is an excellent place for support and lots of practical advice.

Thank you M1. It was expected, but the reality was harder that I was anticipating. 

Eparedez

Jo C. wrote:

Hello Eparedez and a very warm welcome to you; I am sorry for what is happening and can imagine how heartachiingly stunning this news must have been.  We are all here in support of one another and that now includes you too.   Being here will offer support and lots of experiential wisdom; that being said, it is important to know that every single person with dementia is different from the next.  As the saying goes; "If you have seen one person with dementia; well, you have seen one person with dementia."

This Message Board is a great place to come and share and to get support, but do know that a good number of people who come here have Loved Ones (LOs) with significant problem issues that your father may never, ever develop.  Having a dementia diagnosis does not mean that a person will have all the same problem issues; that is just not so.

My mother had a behavioral variant of FrontoTemporal Dementia; it was quite a challenge as it advanced; her illness was about eight years duration.   My step-dad was diagnosed with Alzheimer's Disease.  It affected his short term memory and reasoning as time went on; yet he lived for 20 years after diagnosis when he died of a different cause.  The entire time until the end, he lived in his own small home with a wonderful care aide; he knew who we all were; he knew who he was and where he was; he was able to feed himself; he stayed continent; he could dress himself if clothes were set out for him; he could shower with only standby assistance and he could feed himself.  He was a content individual who simply liked to sit in his recliner and watch favorite TV programs and "read" his newspaper.  Two very different individuals and two very different courses of disease.

The Alzheimer's Assn. has a 24 Hour 365 day a year Helpline that can be reached at, (800) 272-3900.  If you call; ask to be transferred to a Care Consultant.  There is no fee for this service.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They are very kindly supportive, have much information and can often assist us with our problem solving.

Probably, the most helpful writing is, "Understanding The Dementia Experience," by Jennifer Ghent-Fuller.  This can be found online and printed off to keep for future use.  This writing explains the disease and the dynamics as it advances and also, explains the why of some things that happen.  I think you will find it worthwhile reading.

I would put the link to the writing here, but when I do that, it hyperextends the Post clear out into the margins, so just Google the pdf version of the title and author and the pdf version will come up.

Please let us know how you are and how things are going, we truly do care.

J.

Thank you so much for your warm welcome and all the helpful information. It has taken me sometime to come back and read through all of the comments since originally posting. I truly appreciate you and will look into all these resources. 

Eparedez

sandwichone123 wrote:

Welcome Eparedez,

I don't know what kind of treatment you are already getting for your anxiety, but this would be a very good time to find a good prescribing therapist to work with if you're not already. One of the golden rules of Alzheimer's is that care for the caregiver (even if long-distance) is the best care for the PWD (person with dementia).

It may be that the information you got yesterday is the bulk of information that will be available from your father. My dh knows what he has (many don't), but cannot communicate more specifically than "this...thing," or such. Many others don't know they are ill or stop understanding that after a period of time.

*********

Thank you for your warm welcome sandwichone123. Luckily I started with a new psychiatrist before the Thanksgiving holiday and have been working on finding someone for talk therapy also. That is definitely a good golden rule to live by thank you very much for the reminder. 

I am working on getting in touch with his doctor so I can get more information. My father said he has no problem giving me access to his doctor. 

Thank you again for your sage advice. 

Eparedez

Emily 123 wrote:

I'm so sorry.  Sometimes these conversations are easier to have in person.  A good start is to talk to your dad about his healthcare wishes, what his financial plans are, and to see if he has thought about who will need to be his power of attorney (POA).  Part of the disease can result in the person being unable to carry out or even formulate a plan. You might have to have a hand in setting this up.  A certified elderlaw (CELA) would be able to talk with your dad about planning, as well as get the paperwork started.  It might be helpful to him to get a meeting set up with one and you participate via Zoom.  https://www.elderlawanswers.com   

Also while you're there do a touchbase about what he can still do--are his bills paid?  Can he go to auropay on more things?  Is he still keeping any prescriptions filled and is he taking those correctly?  Is he eating enough? Doing household chores? Taking care of pets? At some point his ability to live independently without help will decline. Now is a good time to think about what that will look like for him.   Assisted living with eventual memory care?  in home help? Group home?  If he has online accounts can he share the password with you?  Would he sign off on allowing his medical information to be shared with you? Browse the forums as there are many good past threads. Check out the local resources here, and see if he might want to participate in a support group.

I found this helpful in understanding what changes were coming our way:

http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

https://tamcummings.com/stages-of-dementia/

Emily--- Thank you so much for your response. Luckily I was there in person when he told me his diagnosis, but sadly I had to go back home a few days after we talked. 

Those are all good points of what to make sure are on my check list. I have started having those conversations with him, my stepmom, and my mom. I think since his doctor said he is in the early onset stage of his diagnosis we have a bit of time so we can get all of that set up. 

I do think that I will see if he is interested in getting set up in the community on here.