My dad went from delirium to dementia since a fall in December. Some days he can't be left alone due to safety issues and other days he's pretty lucid. The more severe the symptoms get (hallucinations, paranoia, extreme confusion), the harder it is for me to bounce around with him. When he has a good day I find myself secretly hoping he's getting better. Then a bad day comes and it's like being crushed again. I know he's not going to get better. I'm just having trouble with the random back and forth.

Oh my goodness's so difficult. The most difficult season of my entire life watching my mother decline slowly as I try to provide her the best care possible.

My Faith keeps me going day to day and helps me to handle the anticipatory grief and sadness.

You lose them over and over,
sometimes in the same day.
When the loss, momentarily forgotten,
creeps up,
and attacks you from behind.
Fresh waves of grief as the realisation hits home,
they are gone.
You don’t just lose someone once,
you lose them every time you open your eyes to a new dawn,
and as you awaken,
so does your memory,
so does the jolting bolt of lightning that rips into your heart,
they are gone.
Losing someone is a journey,
not a one-off.
There is no end to the loss,
there is only a learned skill on how to stay afloat,
when it washes over.
Be kind to those who are sailing this stormy sea,
they have a journey ahead of them,
and a daily shock to the system each time they realise,
they are gone,
You don’t just lose someone once,
you lose them every day,
for a lifetime.

Credit: Donna Ashworth
Helpful Answer (12)
Reply to southiebella

This may sound silly and it isn't mean to be trite, but do you have specific phrases or funny memories that you share with your dad that still make both of you laugh? My dad has pretty severe short term memory loss and one "positive" of that I guess is that I can tell him the same funny story several times in one visit and he belly laughs each time, which triggers me into giggling too! Laughter is a great solace when you're watching your parents decline. Believe me, if you find one of those laughter triggers use it! 😁 Hugs and comfort to you.
Helpful Answer (8)
Reply to SpringLover
Endure Mar 23, 2023
I agree laughter is the best medicine 😊
I feel for you. I have a 92 year old mom living with me, and I am an only child, work full-time, have 2 kids and married. It is a lot. I have to really own the fact that she isn't getting any younger, and she won't get any better. She is frail and will continue to decline as she ages. Witnessing it, day to day, can be tough. I try to remind myself that this is part of life, and this is her journey, not mine.

I try to go for walks, make plans out so I have something to look forward to, and fully recognize the mom I have, isn't the mom I had. That is crucial. She is older, unable to do what she used to do, and cognitively/physically isn't the same.

Hang in there.
Helpful Answer (7)
Reply to Janine5432

Wish very much I could tell you it will get easier. Unfortunately , that probably would be a mistake. I have been care giver for my 80 year old bride for three plus years and I agree with you, there are very good moments, and many moments that are terrible. All I can say is cherish the good, and do your best to accept, and forget, the bad. I learned to take it one day at a time and try not to ley the bad stuff linger on. We are now in an AFC home with 10 residents who have various problems. I try to visit every day and am still having good days and bad. The difference now is that I can escape for part of the day or night and free my mind. It helps, but it is not the total answer. Good luck and rest assured that we who have been there will keep you in our thoughts.
Helpful Answer (7)
Reply to DGsdude
NeedHelpWithMom Mar 23, 2023
You sound like a wonderful husband. I love your description of your 80 year old bride. So sweet!
Welcome to Forum. So sorry for all you are dealing with.
Has your Dad had any final diagnosis as to what sort of dementia he has been suffering from? They do vary. Some have more acting out, more paranoia and anger and some have hallucinations. Some, like Lewy's Dementia can be a bit up, down and all over the place, especially in the early stages.

Are you the sole caregiver, and what sort of support do you have? Do you live with your Dad, or does he live with you.

Let us know if you have questions, and caregivers here will try to help with some suggestions or answers. We wish you the best.
Helpful Answer (6)
Reply to AlvaDeer

Gosh, it’s brutal, isn’t it?

You have lots of company here.

So many of us live with the long, slow grief of being the child of a parent who is suffering from what seems like an eternal decline. Step down, level off. Step down, level off.

This is the place to be, when you want a listening ear.
Helpful Answer (6)
Reply to cxmoody

Welcome to the roller-coaster of dementia. It's not only a crazy ride for our loved ones but for us as well. And the only way we can get off it is when our loved one dies.
That's the sad truth of it. And because there are hundreds of different kinds of dementia, some of us are only on the roller-coaster for a few years and others are on it for 10-20 years.
The only thing I can tell you is to enjoy the good days and try not to let the bad days get you down.
And the best thing you can do for yourself is to not be in denial about your dads diagnosis, and accept it best you can. So many people(including the one suffering with dementia)are in denial about their loved one and don't want to have to accept the truth, but the sooner you do the better off you will be.
Helpful Answer (6)
Reply to funkygrandma59

I know exactly the feeling. My mom {89 yr old} has Lewy Body with the same symptoms you described. Her latest hospital stay has plunged her into a deeper level of dementia. I dread my visits. When she is very demented I feel the crushing sadness and it takes a day or two to get me back to normal…then another visit. If she has a good day I leave hopeful. Lewy is a progressive terminal illness. I lose sight of that on good days. I am now seeing a mental health counselor. It takes the edge off my pain. This roller coaster ride for 4 years has been life changing for all of us. This is a tough road. Good Luck.
Helpful Answer (6)
Reply to Sadinroanokeva
Buddysgirl1 Mar 23, 2023
I have also started seeing a counselor. My dad is 93 with Lewy Body. Trying to keep up with the delusions is exhausting. To see a former high ranking marine afraid of imaginary things is heartbreaking. Sometimes you need to get support outside of the family
There's no one size fits all answer.
I just did my best when my own mother developed delirium.
One episode of crazy stuff at a time.
Can't change their fate but you can be there loving them and make memories. My mother died in 2020.
This may seem weird but memories of her no matter her state of mind the last weeks of her life have become memories worth having.
You are there at the ending of your father's life story. A chapter to cherish. Not all adult children have that chance. Wishing you the best.
Helpful Answer (5)
Reply to SueNWPa

I just read your profile. I feel your pain. It’s extremely difficult having a parent living in our home and watching them deteriorate before our eyes. Been there, done that.

I see where your dad is 90. My mother died at 95. It’s so sad that they linger for so long and it’s very hard to face the reality that they won’t improve.

Please feel free to vent to this forum. We have all done so. You’re not alone in your suffering. Caregiving is physically and emotionally draining.

Have you considered placement in a facility if you find that that caring for your dad is becoming too difficult to continue?

Wishing you peace as you navigate your way through this difficult journey.
Helpful Answer (4)
Reply to NeedHelpWithMom

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