My wife's EO is causing me to feel hopelessness every day.

Hohenzollern

I feel overwhelmed by the severity and frequency of my wife's symptoms.  Yesterday, she stood next to the wrong car in the parking lot.  It was not even the same color as our car (which we have had for years).  I had to convince her that she was standing next to the wrong car. 

She has lost much of her ability to read.  She hides this as much as possible. However, she is a Stanford graduate and is very much an intellectual.  She is losing all of this and I know she is grieving the loss.  

My wife's personal hygiene has gotten spotty.  Sometimes she goes several days without a shower. She was always a very clean person.  It puts me in a tough spot.

DoctorTim

Hoping for something that probably won't happen might be the source of your stress.

It may be that your wife has a progressive and fatal condition for which there is little or no good treatment. Try treasuring the day you had with her yesterday, instead of the "better" day you might have had with her yesterday, or dreading the worse day you might have tomorrow.

If I ever become demented (it could happen), that is the attitude I hope my wife will have with me.

It's okay to be calmly resigned to her eventual disability and death.

Hohenzollern

Thanks for that advice.  I am learning as I go and trying minimize my anxiety.  I appreciate your perspective.

Arrowhead

Your feelings of hopelessness are understandable. My wife was diagnosed almost 7 years ago. The changing symptoms and loss of abilities are very difficult to witness. I have consigned myself to two facts: she will continue to get worse, and she will eventually die. Nothing can stop that. Hoping that she might ever get better is self-destructive. Acceptance of what will happen is part of the battle that you must fight.  Do not dwell on the negatives, they will only depress you. Look for the happier moments to cheer yourself on. You can survive this. You are stronger than you realize.

Aunt Bin

Regarding the hygiene concern:  I would suggest a daily plan checklist with activities and times they will occur.  Keep the language simple.  We use a calendar for our family member.  She used to write it herself, but now it is done by others in the family or her daily caregiver.

My thoughts are with you.

L

SusanB-dil

Hi Hohenzollern - Welcome to 'here', but sorry for the reason. I'm sure you will find you are not alone at this forum.

Yes to what Arrowhead has posted... 

We are just going with the flow with MIL and mom. Some days better than others, and we try not to take things personally. (sometimes easier said than done)  For hygiene, MIL for some reason has something against showers, but will still 'wash up' out of the sink, even though we know that is not nearly as effective. She was a schoolteacher. Mom was a nurse. It is difficult to see both of these remarkable women not be able to do so much, any longer.  So again - you are not alone with the graduate who is losing so much of her abilities. There are other activities, though, that they can still do. You will just have to figure it out as you go, and maybe use some of the suggestions that are here in the forums.

Doctor Tim - also welcome to 'here'. and yes, just keep me comfortable.

Aunt Bin

I need sugesstions for how to talk with my sister whose symptoms are progressing, especially verbalization.  I do not live near her any longer and therefore have to rely on daily phone calls and monthly visits.  I might start a phone conversation with how was your day or what did you do today.  This is not working, and I fear it is causing stress for my sister.  I feel like I need a how to book.  Any recommendations for resources or from personal experiences?  How do I learn more about what to expect next?

Thanks.

Jo C.

Hello and welcome, Hohenzollern; the following link is an excellent writing that is highly respected and describes the early and ongoing changes wrought by Alzheimer's Disease, and the "why's."  I strongly recommend reading it and even providing it to relatives who may benefit from greater understanding:

https://www.alzconnected.org/uploadedFiles/understanding-the-dementia-experience.pdf  

Hohenzollern, I am very sorry for what is happening; when experiencing the actual decline that dementia is causing, there is often a period of grief regarding the losses, especially with someone beloved to us. This can be part of the process of such a significant loss that will continue.  No two people are the same, but  grief and even anger at such losses is often a normal part of the process.  Your feelings are your own and it is perfectly acceptable to honor them while you begin to work through all that is happening.

For your wife who is able to feel her own changes, it is also laden with emotion and is diffcult fo her; she will be feeling the losses within herself and does not have the same ability to use logic and reasoning to understand as the brain is already compromised.  Your understanding of the dynamics and ongoing support will make a difference.

It can be seen that you care deeply and are on the first steps of learning how to address the various challenges that have risen.  We all learn as we go along.  I would also like to invite you to Post on the Spousal Forum; so many Members there who have experienced much the same with their spouses and there is much experiential wisdom to be found.

As for the hygiene, one can decide to "partner" with bathing.  If she bathes even two times a week that should keep her in good stead, daily is not necessary unless she is incontinent and requires much cleansing.  In some situations, bathing is not accepted.   In such an instance, having the bathroom ready with a chair to sit on, and large beach size towels to wrap her in, and bathing one body part at a time leaving the rest covered can be an option.  There are even pre-wet bathing cloths that can be heated in the microwave.  If private area hygiene is an issue, some of  the Members have purchased bidet toilet seats to assist.  It is all dependent on the Loved Ones (LOs) acceptance.  If she is willing to shower or have a bath:

Bathing is best done by having the bathroom ready for her.  A shower head with a long hose that she can hold without getting water in her face if that is an issue for her may help.  If it would assist, perhaps a bath stool or bath chair to place in the shower so she can sit.  Also towels at the ready, the room well lit but not glaring; a nice smelling soap or bath product, and even making it a duo experience can help. Some have also promised a favorite treat after the bath is finished.  Sometimes a person develops modesty and does not wish to be naked in front of another person; in such an instance, a long t-shirt or even bathing suit and washing through the garment can be helpful.   If she has preferred a bathtub, then being with her for safety purposes, having the water ready and using some of the above suggestions may help.  Worth a try.

The Alzheimer's Assn. has a 24 Hour Helpline available 365 days a year.  It can be reached at, (800) 272-3900.  There are no fees for this service.  If you call, ask to be transferred to a Care Consultant.  The Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They are wonderful listeners and good support.  They have much information and can often assist with problem solving.

  Do try the Spousal Forum and do let us know how you are doing; we are all here in support of one another and that now includes you too.

J.

Jo C.

Hello Aunt Bin and welcome; you are a very caring and devoted sister, she is blessed to have you in her life and looking for ways to be her advocate and beloved sister.

Jo C.

Hello Aunt Bin and welcome; you are a very caring and devoted sister, she is blessed to have you in her life and looking for ways to be her advocate and one of her beloved carers.

It appears you are "lost" in someone elses Thread, if you go out and initiate a new Thread of your own, you will be more easily seen and receive more responses.

I have given a link to an excellent writing in the above Post; it would be a good idea to download it and read it as it explains so much.

Also included above is the number and explanation of the Alzheimer's Assn. 24 Hour Helpline; it may be helpful to make a call and speak to a Consultant.

 Since you have been sensitive to your beloved sister's feelings, I can well understand your not wanting to cause her upset.  It may be that calls may no longer be a positive experience for her and may cause her grief.   You do visit her each month which is really wonderful; perhaps rather than making calls, you can send her greeting cards during the month that she would get in the mail as a nice surprise and enjoy looking at the pictures within the cards. Perhaps keeping touch with her children that live near her will also be helpful to keep in touch with what is happening. 

Such losses are heartfelt and I am truly sorry.  Your visits with her must be a positive for both of you at this time, it is good that you are able to continue with them.  As said, your sister is blessed to have you in her corner and sensitive to her changes and needs.

I send warmest of thoughts your way along with best wishes for a wonderful next visit with your sister,

J.

Jo C.

Hello Dr. Tim; I am a bit confused by your Profile. I noticed that you list yourself there as a, "Professional Caregiver, " and also list other professional information. To clarify:

What specific field is your doctorate in?  Is your professionl life limited to being assigned as a legal conservator?

How long have you been a conservator?

How do you diagnose dementia in a person - what testing is done to confirm the diagnosis and then specifically which specific type of dementia is present in a person as there are so many different types and adequate treatment relies upon the specifics . . .

 Do you or have you done any hands-on caregiving of any individuals?

It would be nice to have a clearer picture.

Thank you.

J.