The Unknowns

BSauter

My dad was diagnosed with Mild Cognitive Impairment in May of 2022. I'm the Medical POA for both of my parents. I take my dad to mostly all of his appointments so that I know exactly what is going on. 

I have a younger family of my own with a husband that works from home (most of the time). I feel a bit overwhelmed lately. I am a planner. I need to plan things out and know what's going on. I feel like with this diagnosis I don't know what to expect. I'm more emotional now more than ever and that says a lot for me as I'm a highly emotional person to begin with. 

We have noticed a difference in my dad over the last 2 weeks. I called his doctor to see if she can evaluate him to see if there has been a change in patterns or if the medication is having side-effects. 

I think for me, the worst part of all of this is the unknowns. We don't know when patterns will change, we don't know if the meds will work, we don't know how long he'll be at one stage then progress to a more altering stage. My mind wonders a lot lately. I have a family to take care of myself but find that I'm wide awake in the middle of the night worrying about what the next stage is for my dad and when it will happen. 

Any helpful advice on how to emotionally get myself back on track?

mommyandme (m&m)

Welcome to this forum, so sorry that you need it though.  I’m not sure if I have any good advice as this is an emotional roller coaster. And although there are numerous parallels between dementia patients and their families, it’s different for everyone.  

The Serenity Prayer may help some:  “(Your Higher Power), grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.” 

There’re lots of readings and videos that can be helpful too.  I’m sure someone will come along with some links for you.  

The unknowns can be overwhelming for sure.  This journey is quite an adventure.  Sounds like your parents don’t live with you? Do you have financial POAs also? Make sure to keep your immediate family number one.  If your mom is his primary caregiver, maybe you can give her some added support which she’ll need in the near future.  

If your dad has a sudden change of behavior you might want to make sure he’s not battling a UTI.  They can be silent and reek much havoc.  

I would suggest that while your dad has a diagnosis of MCI and isn’t in the grips of full blown dementia, spend as much quality, worry free time as you can with him.  That goes for full blown dementia too, of course.  The unknowns and cognitive changes back and forth are cumbersome.  A therapist experienced with the dementia family dynamics could be very helpful too.   

I’m very sorry for your fears and anguish.  You and yours will find your ways through this.  

SharonAnne7

Hi... I am a live in caregiver in a household with two 92 year old clients. He has dementia and she is still pretty active although is starting to show her own signs of aging. 

What's important about the unknowns is that you have no control over them. Find support to feel your feelings if that's therapy for you or support groups or take free time off, or spend time with your best friend... whatever works for you, because you won't be able to plan for the future for a little while now. 

Enjoy what you can control. Your favorite meals with your dad. Whatever else was favored and routine, plan them, choose to do them. Settle into an acceptance of where you are now and enjoy it in the time he has left.

Specifically (!) Don't worry about the stages or the medication. That process is so different for everyone. There's no model. There aren't very many patterns. In time, you may see your own families patterns and you'll start to get a sense and can prepare better. For now, you may just be in a learning curve for a while. 

Usually my client gets out of bed (after a lot of cajoling) between 10 and 12noon. Yesterday, he was up at 8. When I came upstairs at 10 he was already ready to do his insulin and personal hygiene. It was a total different day. Today, (at3) he's all dressed and cleaned up and I reminded him we need to go to the eye glass place to pick up his new glasses. That triggered a need for him to go to the bathroom so he could dress better for the appointment. Now I will have to try and find a way to get him out of the bathroom and on to our errand before the end of the day. I don't know if I'll get it done. 

Sharing with you helps me feel accompanied. When I'm not alone, I can do anything. Identify for yourself what is the most empowering thing you need and go find it. That's the best advice I have after my 15 years as a caregiver.  

May flowers

I agree with all that has been said.

I also a planner and if nothing else, dementia has taught me to take one day at a time. There are things you can get in place like POA, and get a general idea of stages, and ways to deal with certain behaviors, but it is different for everyone. My LO does not fit neatly into the stages. And what works for some doesn’t work for others, and what works one day might not work the next, same with meds.

I wish there was a way to know what comes next and when. 

When I am not dealing directly with my LO and caregiving, I am doing things I enjoy to recharge and keep myself on even keel. I hope you’ll be able to find that balance - it will become increasingly important as time goes on! (Hugs)

BSauter

Thank you very much! My parents do not live with us. We only live about 10 minutes from each other which is helpful. It's just something I didn't think I'd be going through yet as an adult, having a younger family of my own. My dad was diagnosed at an early age as the doctors have explained to us and I, myself, am only 37 so it's a big transition for all of us. I appreciate your words of wisdom and encouragement.

BSauter

Thank you so much! I see similarities with my dad. If he's thrown off of his routine he goes into a mood. He takes an hour to get ready to go somewhere if it's not part of his routine. It helps to find someone that is in a similar "situation" because I feel alone.

Smyles7720

Hello BSauter,

I agree with all that has been said.

Dementia is filled with the unknows and things you cannot control. At first it can be overwhelming thinking about the future. However, reflecting back on my mother who is in the middle stages I would say to you, build the future with beautiful memories of you and your father.  Start learning how to enjoy  time with your father without thinking about tomorrow, things you have to do, etc. Save  those thoughts for after your visit with your father. 

My mother loved to look out the window and look at the cars go by on the road. Now, she likes to stay in her bedroom and is not interested in looking out the living room window any more. I long for the days we would count the cars go by on the street. Each new stage will bring sadness at the progression of the disease and a longing for the stage your loved one has left when he/she could do more.

Educate yourself about the disease, but build beautiful memories of your loved one.

quartlow2

I love all the comments here. I also immediately thought of the Serenity Prayer. As with any suffering, the hardest part is not knowing how long it will last. But our higher power does. I think the only other thing I can add is to try not to fight the flow. It can be very frustrating when our LO can't remember something or "remembers" something differently than what actually happened. If our tone of voice, facial expressions, or touch appears frustrated, they may feel defensive, embarrassed or like a burden. Emotions are the last things we lose. If you don't have teenagers yet, this will prepare you.

Hoot619

It's kind of hard getting up in the morning and wonder what our day is going to be like. This morning I woke up to dear wife yelling.  Not a good sign.  Some days are a little better than others.  I never can tell how her day is going to be.  I can't plan on anything.  Yes  , I should say the "Serenity Prayer"  and try to do what it says .  If I can't get to sleep I read, or if I wake up I read. Any thing to keep my mind on something else besides me and my wife..

All I can say is take it one day at a time. You never know what tomorrow is going to bring, try not to worry about it.  I can't do anything about yesterday but I can learn from it.  Hoot

Rescue mom

Others covered (as much as possible) the crux of your question; but it reminds me of my own early experience…

I suspected DH had Alzheimer’s, and his tests took a few weeks, so I did a little research. The official diagnosis wasn’t a surprise; I knew it’s incurable and no meds help.

But somehow I still thought that once they had the Dx, they could tell me what would happen when; much like how other diseases progress. When would he lose certain abilities, or when would he not know (whatever)?  I needed to know that, so I could plan how to help him and deal with it all.

 It was the biggest shock, a gut-punch, when they could not tell me that. I kept asking,  I thought they just didn’t understand my question, until they told me (politely) I had to go because others were waiting…

I think I’d been in this forum a while to realize there was no answer to what I wanted to know.