How do you handle the ups and downs?

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.

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.

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.

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.

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.

Yesterday was one of those days you described. My 89 y/o mother started out good and took a nose dive about four hours later. What do I do about it? Well, nothing really. Because there is nothing you can "do" to make her better. Her extreme confusion and paranoia comes shining through, and not amount of explaining or comforting works. She'll say, "yeah", and then carry on down the rabbit hole. I make sure she is clean and safe, then let her ramble with the occasional pause for something to drink and/or a cookie.

Have you considered placing him? It may just be too much for you now. His level of care exceeds your ability to meet. It happens to most people caring for someone with dementia. Place him where he is safe, visit, and live the one life you have been given.

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.

Are you trained to deal with this situation? Probably not. Watch some UTube videos for tips and for what to expect. If you can afford in home care for him, that would give you respite. Continuing to care for him will be very difficult. Talk to someone who can advise you on what is best for both of you.

Oh my goodness yes.....it'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 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 had the same experience with my mom. Actually, she was in my house for about 5 years. Because she was familiar with the environment, it masked just how confused she had become. When I decided to place her, I do not think she knew who I was. The day of the placement she was as clear headed as a judge. UGH!
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).

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.

Hello. My heart is saddened because I’ve been through some of what you’re now going through.

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 💕

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.

ChihuahuaMom: I am so sorry that your father suffers from age related decline. Perchance has he received an actual diagnosis? The "ups and downs" are certainly challenging. Treat yourself well so that caregiver burnout doesn't enter the picture.

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.

My mom has moderate alz mixed with vascular dementia. Her moods are all over the place. Often I think something has happened to put her in a churlish mood, but she doesn't remember the event and just hangs onto the emotion which gets directed at me since I'm the one who put her in memory care.
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.

I take every day as a blessing to get those moments when my FIL is still there. On the days when it almost seems like a "demon' has possessed him. We distract him with a puzzle or direct him to an activity like cooking or cleaning. Sometimes it works and other times we just suggest he goes to his room and stay there. Just like a child, time out moment. Let me be clear, we don't lock him in or anything, but we shut the door and let him throw his tantrum. Make sue there is nothing crazy they can hurt themselves. Once he has calmed down, we try over on the directed activities.

My dad lives with me. He has no official diagnosis. Idk what the issue is but his primary care doctor refuses to write that word "dementia" on his record. He's scheduled for a Neuro consult on the 29th. I'm hoping to finally get a diagnosis on paper so he qualifies for more help. I'm guessing he'll have one of his better days that day because that's usually how life works out, right? It's like taking your car to a mechanic because the "check engine" light is on but when you get there it magically disappears.

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.

Maybe shift your perspective. Expect there to be more "down days" and prepare how to deal with them for the long haul. Consider "up days" as gifts to be cherished.