Recent diagnosis. Need help/advice/a place to vent

LongBee2021

My father a fall in January 2021. When I tell you it was an overnight change, I mean exactly that. The night before his fall, he was perfectly fine. The morning he fell, all of a sudden he is incontinent, trouble walking. Literally an overnight change though I was noticing some memory loss a couple month prior to the fall, but nothing that really stood out. One morning in late 2020, I remember looking at him and I swear it looked like he aged 10 years overnight. It was the very first time I saw him as old. He is 83 now. It's been a wild ride since January. The most difficult is that he will not sleep at night no matter how much sleep aid he takes, even the prescribed kind. I think I will have to move him to a facility sooner than I think. The most difficult part is the fact that he won't sleep. All last week I slept maybe 2 hours each night. It is only me and him. I do have a caretaker from 8am - 5pm while I am at work, but I take care of him in the evenings and on the weekends. I try so hard to not let him see how stressed I am. I can't keep this schedule up and I feel so guilty for moving him to a facility right now simply because I am exhausted. Then there's the added knowledge that I won't be able to see him as often as I would like and that he will decline so much faster the second I put him in a facility. I am just frozen in place. What is best? When is best? The most frustrating thing is that there are no right answers. I think by the end of summer if we haven't found a sleep solution I will have to move him. Ugh, it just breaks my heart to even think about coming home and him not being there. His doctor estimated he has about 2 years left to live and I suspect he may not make it one more year considering how quickly he's declined since January. He's on all the medications there are. He has all the care I can provide. I am doing my best to make sure he has a good quality of life. I am not sure what else to say. I suppose I am just looking for community and a place where I can feel heard and validated and possibly get some advice. I am so sad and stressed and depressed and frustrated, I just don't know what to do with myself. 

harshedbuzz

LongBee2021 wrote:

Hi and welcome to the best club nobody want to join. I am sorry you have a need to be here, but glad you found us. 

My father was diagnosed with vascular dementia yesterday. He had a fall in January 2021. When I tell you it was an overnight change, I mean exactly that. The night before his fall, he was perfectly fine. The morning he fell, all of a sudden he is incontinent, memory loss, confusion, and trouble walking. Literally an overnight change though I was noticing some memory loss a couple month prior to the fall, but nothing that really stood out. One morning in late 2020, I remember looking at him and I swear it looked like he aged 10 years overnight. It was the very first time I saw him as old. He is 83 now.

This is one of the hallmarks of vascular dementia- progression is often a series of plateaus and steep drops compared to Alzheimer's where decline occurs steadily. Given the causes, it's likely this has been an issue longer; some of the early signs can be very subtle even to those living with a person 24/7.

It's been a wild ride since January. The most difficult is that he will not sleep at night no matter how much sleep aid he takes, even the prescribed kind. I think I will have to move him to a facility sooner than I think. The most difficult part is the fact that he won't sleep. All last week I slept maybe 2 hours each night. It is only me and him.

This is not sustainable. Sleep disturbances and/or incontinence are often the reasons families seek placement. This is too big a job for one person.

I do have a caretaker from 8am - 5pm while I am at work, but I take care of him in the evenings and on the weekends.

Can he afford to bring in a shift over the weekend to allow you some respite other than work?

I am exhausted and depressed and even worse, my anger and frustration and stress with the situation is really starting to show. He even thinks I am mad at him and admittedly and irrationally I suppose I am angry at him for getting old, even though I know that's irrational and there's nothing he could have done to prevent this. Maybe he sees the frustration on my face, I don't know, but I try so hard to not let him see how stressed I am.

IME, the ability to read and retain the emotional message of others remains pretty intact well into the progression of dementia. On some level he may be picking up on your exhaustion and unhappiness. 

I can't keep this schedule up and I feel so guilty for moving him to a facility right now simply because I am exhausted, even though I know that if I can't care for myself I can't care for him. Then there's the added knowledge that I won't be able to see him as often as I would like and that he will decline so much faster the second I put him in a facility.

It sounds as if now is the time to move him. Most people who do elect to place their LO in MCF wish, in retrospect, that they'd made the move a little sooner than they did. There are positives to moving sooner- he and the staff can get to know one another while he's more capable and have a better sense of him as a person. If you choose well, he'll benefit from a well rested and well trained staff and you can go back to being a doting son or daughter.

He may decline on admission, but there's every chance he may do a bit better than he is now with routine, socialization and activities designed for people who have had a cognitive shift. I had an aunt with vascular dementia who positively thrived in MC for a number of years; I'd say she even improved a bit initially with the structure and social activities. 

I am just frozen in place. What is best?

A placement based on the level of care he'd need during a particularly challenging day. For him, probably a MCF.

When is best?

Before you are so burnt out you there is nothing left to offer him. And while he has enough cognition to adapt, enjoy activities and engage with others.

The most frustrating thing is that there are no right answers. I think by the end of summer if we haven't found a sleep solution I will have to move him.

If you haven't reached out to a geriatric psychiatrist, it makes sense to try that first. They are the experts for psychoactive meds in the elderly.

Ugh, it just breaks my heart to even think about coming home and him not being there.

That is hard. I know in the process of placing my dad in care the weeks and days leading up to the move were much worse than the actual reality of him being somewhere else.

His doctor estimated he has about 2 years left to live and I suspect he may not make it one more year considering how quickly he's declined since January. He's on all the medications there are. He has all the care I can provide. I am doing my best to make sure he has a good quality of life. I am not sure what else to say.

It sounds as though you are a very caring and thoughtful person. In making a transition to a MCF it is important to know that you will still be the most important part of his care team, but you will also be able to slip more into being family.

I suppose I am just looking for community and a place where I can feel heard and validated and possibly get some advice. I am so sad and stressed and depressed and frustrated, I just don't know what to do with myself. 

I think all of us have a sense of how you feel. This is hard stuff.

Good luck going forward

HB

windyshores

I really hope you can move him to memory care. He may be disoriented at first and regress, but don't panic. I can't tell you how many people say they wish they had done it sooner. The interactions and stimulation will be good for him. You can visit- and drive away and get some sleep!

It may help you to join a Zoom or in-person support group. The #1 message tends to be that the caregiver needs care and needs to "save themselves."

Did he have a CT scan after the fall? Are docs sure this is a progression in dementia versus a traumatic brain injury? Is he on a blood thinner? That would make it more likely that the fall could have caused a small bleed.

Also if he went in the hospital after the fall, that can cause more confusion and disorientation.

There is no diagnostic test for vasular dementia that we have encountered. What was the basis for the diagnosis or was it by exclusion?

May flowers

Welcome to the board, but sorry for the reasons you are here!

My FIL also has vascular dementia. The sudden declines are so hard, we have had 2-3 over the past year but then it kind of levels out (at the new level). One of his downturns was right after a fall (out of bed) as well. I always wonder when he has a decline like that if he has had a silent stroke.

We went through the nighttime issues, but in our case, he was on two meds that kept him up - his prostate med made him have to pee constantly and Gabapentin which he was on for restless legs made him groggy and confused all day which meant he didn’t sleep well at night. Taking him off those meds (with the doctor agreeing) helped him. He still got up a few times but went back to bed. 

What is he doing at night? If he is piddling around his room, we learned to sleep through it. We put an alarm mat to wake us up if he went anywhere past his room and bathroom. 

We just placed him last week to MC for many reasons, but like you I was exhausted and it was not good for my health. So far he is thriving there, he isn’t improving dementia-wise (and he won’t) but they keep him so busy and with a group so he has others to talk to. I get updates from the nurse there that he is socializing and participating in activities which is very good for him. She also told me that nearly every family she has talked to wishes they had made the move sooner. Too many wait until there is a crisis. We definitely did not want that to be the case.

Best wishes to you

jmlarue

Just my personal opinion, but I think you are putting unreasonable demands on yourself that will end up destroying your health. You won't be any help to your Dad when that happens. Moreover, I think you have a distorted view of what a good memory care facility is all about. A good facility can actually improve your Dad's quality of life because there is a whole group of people who share the load in caring for him 24/7 365. They aren't sleep deprived. They don't feel the stress of a family member who feels like no matter how much they do, it's never enough. I really hope you will reconsider finding a good care center for your Dad. You both will benefit and you both will have an opportunity to have some quality time together during visits instead of you being overwhelmed trying to attend to his every need. Do this out of love - for your Dad and for yourself.

towhee

Longbee, read your post and listen to yourself. You are snapping at your father and you can't make decisions. You are so sleep deprived that your judgement is poor. You need to help yourself now or you won't be able to find a solution for your father. If at all possible please contact your agency and get help at night for 5-7 days. Get some good sleep so you can think again.

If you don't you will be a car accident waiting to happen, your job performance will suffer, you won't be able to make good decisions for your father, and one night your body will just decide to sleep no matter how much noise your father makes or what happens to him. Unfortunately I speak from experience.

About sleep medications-over the counter ones usually just make dementia worse. Even prescription sleep medications are not usually advised. A neurologist or geriatric psychiatrist will most often prescribe an anti-depressant, anti-anxiety medication, or something like Seroquel for sleep. Occasionally an anti-anxiety medication will have the opposite effect from what was wanted, and make things worse. Our LOs can get their days and nights mixed up, sometimes melatonin can help with that. Your general PCP is sometimes not up to speed on what is best for dementia.

Is your father sleeping a lot during the day? Perhaps consider an adult day care?

 It is not a given that your father will decline in memory care. Sometimes people actually get better. My LO did for a while. You don't have to place permanently immediately. You can try a two week respite stay first. This will give you a break and let you see how things work.

Please do whatever you can to get some immediate sleep. 

Wish you well

LongBee2021

Thank you all for your help! It's nice to have a place to talk these things out. I appreciate it so much!

Cynbar

Why not consider a longer respite stay, say 2 months or so? That would give you enough time to see if he'll settle in, and enough time for you to get totally rested and think things through. If it works out, you can arrange for him to stay.  I know there have been times in my own life when I was so tied up in a situation, I couldn't see it clearly. Either that, or hire an overnight caregiver at least a few nights a week. I agree with the other posters that you can't go on like this, it's an accident waiting to happen.