Whining

[cchan8]

I haven't updated in awhile. When Dad came back from dialysis on Monday there was a report that his blood pressure had been very low, even though they had not drawn much fluid from him. It was like 76/42, something like that. I called Dr A who was a bit outraged that they hadn't just sent him over to the hospital. He encouraged me to page Dr T

Comments

[aramintamd]

Have you already located hospice assistance? If not, now's the time. And they can send home help to assist you with these things, even overnight.

It's intensely difficult, I know, but if you can, try to remember he's not being ungrateful, he's just reacting to the situation and the advanced state of the disease.

Also, at least with Hospice of the Chesapeake, there are groups for caregivers at the end stages of illnesses like these. It really helps to be able to share, so you don't have the sense that you're in this alone.

Hugs...

[cchan8]

Right now we have home health but the same company has a hospice arm so to speak. I imagine that at some point when they see him truly decline they will nudge me in that direction. What irked me most yesterday is that my father didn't demonstrate his abilities, limited though they are, simply to be obstinate. So his decline may get more rapid.

I guess if he had better cognition he would have understood that adjustments to the medications might improve his quality of life. Maybe he didn't understand why we were there and was suspicious. I have to accept this vicious circle ... It is too late. Thanks to ML. He had actually been responding well to the aricept & namenda but then he had a chaotic environment and also she didn't always give him the meds.

All I know is that when Tabby is around he really seems to pay attention to her, so the whole "he needs to be closer to his granddaughter" thing was well justified. As for the rest of us, he will never be the same.

[thirdbase]

Just remember that your love is unconditional. You love him whether or not he shows gratitude and it's got to be tough as hell to not get any (heck, I get annoyed when Ben thanks me for making dinner after instead of before dinner), but you know that if we were sound, he'd be able to say thank you, and you know he'd mean it. You pulled him out a bad situation to make his life as good as you could, because you love him, not because he'd say thank you.

Get in some extra bunny time tonight.

[cchan8]

Maybe that's what hurts the most. He used to be such a people pleaser, very gracious, always thanking people. (I will note, however, that he could hold a vicious grudge). Now he's even quite rude to the professional caregivers. He screams and yells even before they touch him. He exaggerates his pain. I mean, once i was gently pulling a washcloth out from under his chin and he hollered. Because of his aphasia there are no words, just yelling, I don't know whether it would be worse if he could talk. But his mood changes like the weather. The next minute he is smiling. It is not bipolar it's just capriciousness.

Anyway thank you for the words of support,

[whimmydiddle]

This is not your father as you knew him anymore. His brain is broken, and you cannot expect him to react like the person he was anymore. Which I know you understand intellectully, but it's still a bitch. Definitely keep getting help from professional caregivers; this is too big to do alone. I'd he qualifies for hospice, I've heard it can be a Godsend for all involved. Best of luck.

[cchan8]

Yeah, I need to better understand hospice. I have heard that it does not always mean what people think it does.

Thanks as always for the validation. I'm sorry you have to hear about him in this condition when you have fonder memories from your intern days.

frost_knight says he worries that all these memories of taking care of this irritable demented old man will crowd out the few memories he had of Dad before this. Even though of course he met him in 2005 when we started dating but that was also the year Dad got together with ML and started spending more time in California.

My brother's wife has many more years of memories than my husband. I could tell that seeing Dad this way was hard on her.

[jamie28]

the lady i am caring for is usually pretty sweet (she has a totally different issue, so her mind is not as affected) but she has a really complicated feeding/med routine also. a lot of people we have talked to about picking working for her won't do it because they don't want to mess with it, so i can understand some of your frustration

[cchan8]

I'm actually pretty proud of my ability to get all his meds and feeding straight, and I am saving him a lot of money by doing the overnight shift (in the process, procrastinating on selling his house so that is somewhat self-serving).

We do have a home health nurse coming once or twice a week. She has been a big help. There is also a PT, who has been focusing on range of motion exercises. He can sort of move his legs a little even though he can't stand up.

The best value so far has been the caregivers. The ones being sent by our agency are very skilled. They give him one-on-one attention that he could not get in the nursing home. The woman who runs the company also often comes by for emergencies. She is a registered nurse.

Yesterday evening I called in the calvary - our neighbor Andrea. The feeding pump tube popped out of his PEG tube and I discovered it on the floor dripping everywhere and he was wheezing. I was panicking that there had been some disastrous effect on him. But she calmed me down. She came over and checked and

[vvalkyri]

This sounds so very hard, and you are doing an amazing job.

BTW I think it was you who first mentioned aphasia apps for iPad. I'm so sorry that didn't end up working. I thought you might like to know you likely helped someone else, though - over the weekend I found some for a couple I met.