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.
I am my dad's sole caregiver. My sister lives 4+ hours away and is dealing with cancer along with the fact that her husband had open heart surgery a few days ago. My brother is closer and usually visits on weekends for a few hours but it's not exactly "caregiving". He's kind of flaky and self absorbed anyway.
I can still deal with my dad alone at this point but it's sucking the life out of me. My husband is 2.5 years from retirement but at this rate there's not going to be much left of me by then to enjoy it.
Im considering finding placement for my dad sooner than later so I can get back on track and not constantly be on guard for the next emergency.
His Medicare insurance has maxed out his home health benefits (5 visits each for PT, OT, ST, and an aide to help him shower) but because he's a veteran and I'm relentless about finding services he's entitled to, sometime in the next week or two there will be an aide coming twice a week for 4 hours each for respite and showering him. This will be 100% covered by the VA so that's something to look forward to. I'm not sure what I'm going to do for 4 hours, but I guess I'll figure it out. Unfortunately one of my dogs is not the friendliest so wherever I go I'm going to have to take him with me.
Enough rambling for now. Today is my birthday (and my dad's) so I'm taking the rest of the day off from housework. Time for quality time with my pups while dad naps.
Edit to add we live in a tri-level house so he's pretty much stuck on the 2nd floor. With him being wheelchair bound now there's not much for him to do except watch TV and look at magazines. He doesn't read very well anymore so books aren't an option. He has zero interest in anything except the TV, which he can't operate some days due to confusion.
I try to shorten my visits on those days & constantly remind myself I am only human. I wish I could take all the pain and emotional agony from my mom because she does realize she is losing her abilities, not only mental but physical, but that is beyond my ability. I just keep telling her I will be with her through it all. I will not leave and I will not turn away. I will walk through this hell with her as best I can. I will stumble at times, but I will continue to walk with her. That's all I can do on this journey.
5 years she was ok but up and down the emotion grid
This year the range is wider and harder to cope but I have to keep reminding myself this is NOT the same person. Hugs and telling her how much I love her comes her down.
Good luck and God bless
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.
It’s a tough journey but, with new and different tools, navigation, thought patterns and lastly, acceptance, only then can you make it bearable and manageable. Your entire way of seeing him has to be renewed and changed.
Discover the new him and make peace with it. Just know you can not change who he is becoming. Agree with him often( within reason) and if you can’t agree then try to re- direct with a different topic…like just something out of the blue Ex.did you hear that thunder earlier? they usually will follow your lead ( sometimes😅) you have to be creative and able to change topics quickly!
Remember their brain cells are dying , never to return😢.
Make some laughs, make some jokes make sweet memories…so that his end will become a bitter yet sweet existence. And yes, you can repeat same things over & over, and if by any slight chance they tell you you’ve told me that one before then be quick with the wit! Throw this one in: Q…How do you make holy water? A… you boil the hell out of it 🙃.
Wishing you the best 💕
The first day in the ALF she had no memory of my home. It made me realize just how much she had declined and living in a familiar home had mask that decline. In the end, I was so grateful for the clear days and just tried my best to make it through the "not so clear" days. My friends on this forum have told me..."you did not cause it, you cannot control it and you cannot fix it". So, you roll with each day...cry a little (or a lot).
When I placed her I was sure she got worse but then I realized it was that she was somewhere new. She had to learn for herself where everything was and I wasn't there to tell her so it was much harder for her. I realized how bad she is now. She doesn't remember what her kitty looks like anymore. I'm also afraid she is forgetting what my brother looks like since he has not been to see her since before my dad died over a year ago. She looks at pics of my two brothers and doesn't remember him all the time now.
I still cry every day.
My Faith keeps me going day to day and helps me to handle the anticipatory grief and sadness.
YOU DON’T JUST LOSE SOMEONE ONCE
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.
Again.
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.
Again.
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,
Again.
You don’t just lose someone once,
you lose them every day,
for a lifetime.
Credit: Donna Ashworth
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.
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.
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.
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.
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.