First few caregiver steps

Ideaman

My DW was just diagnosed two weeks ago. We are both 76. She is at this time the Susan I know and love with the exception of the short term memory issues. She just started Aricept and it seems to have provided an alertness and sharpness in her behavior. If it is not that med, I'll gladly take any improvements at this time knowing what's to come.

So my main purpose is the gather some wisdom from other caregivers as to what would be the most effective steps to take in preparing for the time when the need for my caregiving time increases.

To date, I have notified all friends and family of the diagnosis and tenderly asked those who can provide support in any way to consider it and let me know. Good response so far.

I have connected with a support group and have my first virtual session in a few days.

One pressing question for now. My has forgotten the diagnosis. I brought it up once recently and she experienced the terror of learning all over again. I was crushed that I did that to her. However, she and I need to discuss our advance directive which means I need to remind her again of the diagnosis. I know I am not alone with this dilema. Any guidance you can provide will be very welcome. Thank you in advance! David.

Davegrant

My DW was diagnosed with MCI five years ago and she has no awareness that anything is different. She has short term memory problems. She has behavior changes as well and she is very suspicious of me. She has stopped doing many of the household things she has done in our 54 years of marriage. Cooking was the big thing and one day she stopped in the middle of preparing something and I asked her what was wrong and she said , "I don't know what to do next" and she never cooked a meal again. She does the dishes. She not longer drives a car. There are many other subtle changes in our relationship. When I first began to notice these changes in her, I was at the point of retiring at about your age. So, we updated the will, and did the advance directive and since I also was also doing these things she accepted them without question, they were age appropriate. I try to live a day at a time.  This site has been a rock for me and I visit it daily as a resource. I respect those who are writing here for their first hand experiences of this disease. I also listen to the professionals. The book, "The 36 - Hour Day has shown me to be a pretty good resource. It sounds like you are on the right track. I wish you well. I try to problem solve the changes as they occur. My biggest challenges have been my emotions and my confusion about the changes in our relationship. Since she doesn't acknowledge the disease at all , I am on my own to figure out what I am seeing is a change caused by her disease or part of our marriage relationship. But I have made it for these five years , a day at a time. Using all these resources I feel that I have changed a lot. And some days , I am back at the starting gate. 

Best to you in your journey.

Rick4407

Hello Idea, sorry you have to be here.  The diagnosis of my DW was 6 years ago.  She has brought it up on 2 or 3 occasions several years ago.  These were brief moments of clarity for her.  We discussed it at length (1 hour) and then it was all forgotten.  My response then and today is we are together and helping each other and we will stay that way.  I've gotten good at reassurance, it is a daily action on everything from hair to her appearance.  Your DW will have or does have anosognosia.  She does not see any memory loss in herself.   

I recommend you read here A LOT.  It is a preview of possible coming attractions.  Everything here does not happen to all but knowing the potentials and being at least forewarned offers some preparation.  

Family and friends may or may not be supportive, many are lost in how to interact or how to help.   Many usually drift away.   It will potentially become a very lonely road for you.

From a practical perspective, see a CELA and get your affairs in order.  Important to be done soon.  Your DW does not have to know the reason, it is just "in preparation for our aging".

My DW is late stage 6 and she remains fairly happy and cooperative though she does require 100% of my attention 100% of the time.  

One of the occasionally overlooked items is start going together to your and her Dr's appointments: "Because you both have a vital interest in each others health".  

Others will add other points, good luck!  Rick

Ed1937

Here are two great links for you. PLEASE follow them. Why your loved one doesn't believe they have dementia- It's NOT denial. 

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

Ed1937

You do not need to tell her again about the diagnosis. Just mention that you think you should both go to have things put in place in case either of you becomes incapacitated. Seeing a CELA (certified elder law attorney) is something you will want to do as soon as possible. He/she can get everything put in place for you, and they will also know the best way to protect any assets you have. It is really important to get this done soon. If you wait too long, you *will* be sorry. I'm sorry you are going through this now, but you've found a really good place to get tips, understanding, and help.

Ideaman

Thanks for your insights Dave! I am already grateful for this message board. I know it will become a source of learning and comfort. I'm with you already....one day at a time. A personal asset that brought me great joy throughout my life...strong empathy/feelings....is now becoming a source of great pain even in this early stage. I am hopeful that over time, these jagged edges of caring so much will become somewhat easier to manage emotionally. I will check out the 36 hour day. Thanks for that!!

Ideaman

Thanks Rick for the response!! I will certainly read a bunch from this group. The previews are scary but welcome. I do want to be prepared. I know that as the years trudge along, the support will likely drop off and the lonely road you speak of may takeover.

I am seeking an elder care attorney. Thanks for positioning advice.

Agreed on the doctor appointments. I have been going as a rule since my DW counts on my advice generally.

Thanks again Rick! Much appreciated. David.

Ideaman

Thanks so much! Will check the links out.

Gig Harbor

I approached it differently. I never used the words dementia or Alzheimer’s. Instead I simply said that sometimes his memory was failing him. I stressed that everyone has some problems whether it is heart, lungs, kidney failure or whatever. I said I could help him with his memory but not the other issues so he was lucky. It has gotten to the point where he freely admits he has no memory but it doesn’t seem to bother him.

Rescue mom

Not sure which “advance directives” you mean, but do you really need to tell her a Dx, or any thing like that, to get the advance directive(s)  done? 

 We did ours without discussing any specific reason or need, it was done as “longterm planning” or “our attorney says everyone should have this on hand,” and/or “getting our future plans settled/under way,” get our ducks in a row now that we’re this age (or whatever reason),  something like that.

If you’re worried about how to handle anything regarding her acting as your surrogate, while you act as hers (as many couples do), you can let her do that now, then go back a day or so later, and have  her removed as your surrogate and name someone else for you.  You do not need her permission or approval or knowledge to do that (at least in my state, FL). Just be aware that if you name more than one person, they often disagree in the future. You think you’re having them share a burden, but it seems to more often create problems (at least from what I see here and hear from attorneys) about decisions.

I also hugely recommend reading a piece you can find online, free, “Understanding the Dementia Experience” by Jennifer Ghent-Fuller. It’s about 30 pages, you may have to scroll down a bit to find the pdf. I thought it was the best thing I’ve read—except for here, where there’s more practical, useful advice than anywhere, about more specific issues.

Bob in LW

David, my situation is much like yours.  My SO has severe short term memory loss but is quite functional otherwise.  She is well aware of her memory loss and often becomes frustrated because of it.  Whenever she asks me a question more than once a day, I calmly respond as if it was the first time she asked it.  I find that it is best to give a short, simple answer because she won't remember it anyway.  The only time that I bring the memory loss up to her is when she accuses me of not telling her something although we had discussed it more than once.

I also find that if I bring up something that we had discussed before I have to explain it from the beginning as if I am talking to a six-year-old child.  Otherwise, she won't know what I am talking about.

Family and friends are aware of her memory situation, but none of them really understand it because they are not with her 24/7 as I am.

Some prescription drugs may slow down the memory loss, but if it is caused by Alzheimer's, it is not reversable. She takes several medications which I place in a weekly pill minder.  I also have to remind her to take the pills each morning and evening.

 I do most of the cooking in our household because she can never remember where to find anything, or where to put it when she is finished. 

When we travel, I help pack her bag so that I know where things are, because otherwise she won't remember what, or if, she brought it.

One upside of living with memory loss is that she never says to me, "Yes, you already told me that!"

sandwichone123

However, she and I need to discuss our advance directive which means I need to remind her again of the diagnosis.

When planning for advance directive, you should both have a durable Power of Attorney (DPOA) written. The only reason you need to give is "we're getting older." Hers should name you and another adult, and yours should name two adults you would trust to pay your bills if you were in ICU. DPOA allows one to do business for someone else. It would allow you, for instance, to sell a house you jointly own or manage her retirement funds. Don't point out who you have selected on yours.

DPOA for healthcare should be set up similarly, but allows the named person(s) to make healthcare decisions for the subject. Sometimes these also include other directives such as code status and particular treatments, such as tube feedings, that should be offered or avoided.

Ideaman

Bob, thanks so much for your message. This is a huge learning process and I am at the starting gate. Best of luck moving forward. David.

Ideaman

Rick, thanks so much for your thoughts. So helpful. I am buried in learning so I can't add much now. But I will keep up with this message board. So helpful!! Thanks again!!

Ideaman

Thank you Ed! Much appreciated.

Ideaman

Good advise. I have put it to work already. Thanks for that.

Ideaman

Thanks for the insights. Most appreciated!!

Ideaman

Thank you for the message. Most appreciated.!

Fairyland

When you are getting all the paperwork done, you could, if it helps, have her name as your POA etc, but go back later and quietly change it to someone else in good health. No need to discuss her diagnosis with her, it’s just a normal thing to do.  

Everyone should actually do this, even without dementia in the picture.  

Just Bill

I cannot add by adding my wife's behaviors I can see them in everyone else's posts. What I can add is my reaction to them. You will get used to her current condition and think to yourself hey this isn't so bad I got this. Then she will have a major noticeable change and you will be shocked and panic and there is no where to go and nothing you can do in that moment. Make friends with your wife's neurologist and accurately describe her new symptoms as they happen. Educate yourself as much as you can about the disease so you can prepare yourself as much as possible. Lately it is a pattern of incremental behavioral change, shock, adjust, adapt, get used to that current condition then repeat: behavioral change, shock, adjust, adapt and get used to that current condition. In between a lot of horrific moments there will be beautiful tender moments with your wife, cherish those. Practice mindfulness and be in the moment as much as possible. Questioning the past and foreseeing the future can be more than your mind can handle. Ask yourself is everything ok right now ? Great. Take care of yourself physically, emotionally and spiritually because you will need skills in all those departments. You are going to feel like you are all alone with this and you and your wife are in a small little boat on a huge ocean. Then you find this group where you find a sense of community and you are not alone. Stay strong and good luck.

llgd

My father is 71 and has shown signs of dementia (or other) for almost a year now. He refuses to let anyone go to the doctor with him so details about what he is telling them along with information about medications is almost nonexistent. He is also very agitated more than not along with a 'fight or flight' reaction that comes and goes and is causing many issues in public places. Any advice on how to persuade him to let someone go to the doctor with him and take his prescribed medications for diabetes, high blood pressure, cholesterol, anxiety would be greatly appreciated. He is under the impression that all medicines are causing his symptoms and is refusing it. Thank you!

sandwichone123

Ilgd,

Welcome, and I am sorry you have not received any responses. If you post a new thread you are more likely to get responses.

That said, my dh is also on these medications for similar conditions. After he was diagnosed, we both knew what the future looks like, because both of us saw our grandmothers straight through past Stage 7. He has refused any medical care since that day. My dh does take his pre-existing meds, but won't be able to get them renewed because his doc fired him when he wouldn't get labs drawn. He enjoys all the foods he had previously avoided because, really, what's the use of prolonging life, when he knows he'd be prolonging Stage 6 and 7? Since I don't disagree, I don't try to make him change that, although I am concerned about when he runs out of his meds. I would like to find him palliative care that would improve quality of life within the parameters he is willing to live with.

Ideaman

Thank you the sobering overview. Scary but needed.

Ideaman

I am seeking info as to what my priorities should be at this early stage of my wife's diagnosis. She is pretty much fully herself except for the short term memory lapses. She continues with all the day to day patterns of life with little exceptions. But since the changes are coming, I need to be prepared.

Is there a general pattern to the evolution of the disease? If yes, what should my priorities be in terms of identifying and readying outside help such as hourly day care, nursing care, etc. I have made a list of the area caregiver support. My instinct is to interview them as to their services, methodologies and costs. Then make a list of the organizations that impressed me with contact info so that I can connect with them quickly when needed.

We do have an up to date healthcare directive that addresses the Alzheimer diagnosis.

Any guidance regarding the priority steps I should be taking is appreciated. Thank you!!

Davegrant

Ideaman:

This is what I have learned- right or wrong.

My experience over the last five years has been to try to live a day at a time and take on one thing at a time.  This disease does have stages but each person is unique within the stages and the brain is so complex that it is hard to make exact predictions. To prepare for the future I follow these forums to enhance my general knowledge. I monitor my DW for safety issues .  I seek her input and try to carry out her wishes. I use my own discretion in most things.  I have adjusted my behavior to not argue or disagree with her. I try to take care of myself by getting away from the house for about five hours a week. I pay close relatives a modest fee to insure their presence . Sometime I would like to stay home and not spend the money but I consider it an investment in my mental health that I need. I spend a lot of  my time in the library or grocery shopping where I am alone and can plan the purchases better. My wife tends to buy items that she use to buy but now refuses to eat. So even a task like grocery shopping is more of a job of monitoring her activities to keep her safe while trying to complete the task. Often the solution becomes the new problem as some say. I most cases it would be easier to do it myself but I want to keep her as involved as she can.

Each day is a challenge : It is trying to live as best as I can during a period of rapid changes in one of us due to disease. Its all I can do to manage these daily events that present themselves. 

In addition to this site I use all the resources in the community including legal, county government and non profits , medical advocates and anyone who is available. For example this week we are going to court so that I can have Guardianship in case it is needed. I am preparing for the event that I pass away first this may protect the next in line to bear this responsibility. We have aa blended family so the possibilities for confusion compounds.  

Best to you in your journey. 

sandwichone123

First steps include seeing a CELA ASAP and getting Healthcare Power of Attorney (POA), durable POA (which lets you do banking and ownership issues on their behalf), wills, a financial plan, etc.

Other than planning for a future, my first priority is to help my dh have the best *today* possible. Want to lie on the couch? Lie on the couch. Want to take a walk? Take a walk. Want ice cream? Have ice cream.

Iris L.

If you have had a "bucket list" of travel or another cherished activity, figure out how much you can do now, taking into consideration Covid precautions.  Soon, you won't be able to travel.

Read the online reading material, read these threads and watch a lot of pertinent videos.  Post questions whenever you need to.  Don't hesitate.

Iris L 

Ideaman

Thank you Dave!! The perspective of making the best of present day/moment is one that I try to incorporate in my life. So shifting that goal for my wife will be a natural process. Much appreciated. Best.

Ideaman

Thank you very much! Wise suggestion. Much appreciated!!

Ideaman

Thanks for your message. Hoping for the best for you and yours.

Ideaman

Thanks Iris. The videos are so helpful and I will continue to watch and learn. Much appreciated.