Jeri, the guilt is very normal. I don't think there is anyone on this board that hasn't gone through that. Could we all have done a better job as caregivers? Maybe. Would it have changed anything? No. We can't win against this disease. All we can do is be there for them and love them. You have done that and you did it well. Time to give yourself a break. ((HUGS))

Dear Jeri,
I'm so sorry about your Mom. Please know that even after
she moves to a care facility, your role will not end--it will
just change. She will need you--her beautiful, loving daughter--
to advocate for her and watch her back and let the facility's
staff know that you ARE watching out for her and expect to
be treated as a team member. The challenges will be
different. And you will do an amazing job, just as you have
as your Mom's primary caregiver when she was with you.
Look that guilt in the eye and tell it to take a hike.
It's just getting in the way of what you need to do next.
((((Many gentle hugs))))) for you and your Mom as you
go through this transition.
Carol

Jeri,

One of our greatest fears as caregivers. Our loved ones having to go into a care facility. I'm so sorry that this is happening. I know this is something you never wanted for your Mom.

And the guilt, yes so very normal. I think caregivers throughout their journey feel guilty about most things along the way. We seem to always question if we've done enough. I know I certainly have, and continue to do so.

Try to take all this change a step at a time. I'm sure your head is whirling with things to do. Be the best advocate you can for your Mom while she's in the care facility. You've done an excellent job of caring for her, and I know that won't change, it will just be a little different now.

Come here as much as your time will allow. So many on the forum have the same situation as you, and will be here to give you all the very best advice. And you will also give us, that one day might have to do the same thing, many helpful hints and suggestions. We will all do what we can to help make this an easier transition for you.

Keep us updated on what's going on. We're here dear friend.

Jackie

I'm sorry to hear about your Mom Jeri.

Caregiver guilt does stink. In situations where I've blown up at MIL, I feel bad and wish I could reverse time and not do that. Learning from my mistakes is hard but I still realize I'm human and I'll mess up alot.

Kat

Sorry, I haven't had a chance to get on here this week. My brother (who takes her to that doctor) says her next appointment isn't until NOVEMBER...sigh. She has hit her Medicare Part D gap already this year, so the Exelon is coming out of her pocket.

I suggested stopping the Exelon (if I really felt she was getting any benefit from it, I wouldn't even think of it) to my brother and he insists we continue to give it. He is somewhat in denial. I think he has seen her twice in the past 2 months when he took everyone to dinner for her birthday. Apparently we were at 2 separate dinners because from where I sat, she was pretty disoriented and where he was sitting, she was "really good." I should also mention that I sat next to her and I helped get her the things she needed (condiments, etc.), I ordered for her and he was talking to his wife and son while all this was going on.

When he gets her next week, he's going to get a dose of reality. I have called him a few times to talk about bathing and things and he has barely paid attention and I can just tell he thinks I am overdramatizing....

This week she was putting on her clothes to start the day at 4:45 AM one morning. Today, she had her pajamas on to go to bed at 6 PM, laid down and then 2 minutes later was out in the living room watching TV. It's a lot of up and down right now.

Oh Jeri, I'm so sorry. The guilt is totally normal. I sit up late at night reliving the day and wondering what I could have done better--we all do that. I expect as things progress I'll never get any sleep!

You are following the exact criteria I have for myself and I think everyone has--wherever the safest place for our LO is, that is where they need to be. Your role will still be just as important now as it has been. You are her voice and her guardian.

Hello all. Boy, what a week.

Mom stayed in the hospital until yesterday, when she was moved to a facility. Right now she is in the "skilled nursing" or "rehab" unit. As soon as there is a female bed available in the AD unit she will be moved.

Yesterday just broke my heart. We went to see her and see how she was getting along. We stayed for a few minutes, but when we were getting ready to leave she said, "Am I going, too?" All I could think of was "maybe later." I know that by the time I was out the front door she had forgotten that we were even there, but I remember. That is the worst part of this disease, on we caregivers that is. Even though our LO's don't remember we do.

That is about all for now. There are a million thoughts running through my head right now and eventually I will be able to write them down. Now is not that time. I will be in touch soon.

Thank you friends.

Oh Jeri, when you said that your mom asked if she was going too, it just ripped my heart out. I can only imagine how hard that must have been for you. Stay strong sweetie and know that we all care about you and hold you and your mom close to our hearts.

Jeri,

When your ready to talk, we'll be here. Take your time right now to take care of you. Keep on updating us when you can.
You just concentrate now on getting Mom settled, and doing what you have to do.

Jackie

Aitan, I didn't realize your Grandma was the same age as Bill. He turned 79 on June 30. He also scoots around in his wheelchair by using his feet. He can walk some, very unsteady, but I think he feels more comfortable and safer in his chair.
Bill doesn't hit his plate like you describe, but he does tap his hand on the table and it progressively get faster and louder until I reach over and put my hand on top of his. He also does this when sitting or even in bed.

Bill is still feeding himself, but with a spoon and I use a plate that has deeper sides so he doesn't slide the food off the plate as easily.

I just brought Bill home from a 5 day respite, which went very good. Yesterday I layed down next to him and put my arm around him. He put his across me and said "I'm glad I'm here with you". Boy did that sound good to me.


Bill just got out of bed so gotta go.

Joyce,

So nice to hear from you. How wonderful for Bill to say that to you. What a nice feeling to realize that they haven't forgotten love.

Keep us updated and let us know how things are. We could always use your expert advice. I know with me, Mom daily progresses to different stages, and then things seem to change again. Seems like this disease doesn't stay the same for even a minute!

Actually I was wondering if you could advise me on something. I need some kind of alarm or something to warn me when Mom gets up in the middle of the night to go to the bathroom. Nothing that would scare the heck out of us both, and not a baby monitor. (have one, and it drives me crazy) Any suggestions?

Again, so nice to hear from you.

jackie

Jackie,
I started off with a small alarm that you can get at K Mart or one of those stores. It sticks on the door and the door frame. It can be set to a continuous alarm when the door is opened or just a "ding-dong" (like a door bell). It cost around $20 for three of them in a pack. That gave me one for both outside doors and his bedroom door. Hope one of these will help you as much as they did me.

Jeri,
I hope your mother is adjusting and you are doing better. I know how much it hurts to leave them someplace other than with us. Even taking Bill to respite for five days makes me feel guilty. Makes me feel like I'm failing him even though I know it's best for both of us.

Joyce,
Thanks so much. Sounds like something like that will work out really well.

Jackie

Update on Mom on the AAA (Abdominal Aortic Aneurysm) and the passing out:

Well, I took Mom to the specialist, the one that had done Mom's surgery 2 1/2 years ago. And I found out something very interesting, that I guess I should have known then, and obviously forgot.

When you have surgery on an AAA, they do a bypass through the aneurysm, it's basicly like a heart stent. Well, the aneurysm stays there, it never goes away. That's the part I didn't know. But because it's bypassed, the aneursym is inactive, and eventually shrinks. The size of the aneursym 6 mo. after the surgery was 4.9cm. And now it's down to 3.1cm. Gee, wouldn't you think that the report I read would have kinda explained that. And Mom's GP too, she scared the hell out of me telling me I should go see the specialist. And of course the passing out has nothing to do with that.

Last Sunday, and Monday, Mom had two very bad episodes of near fainting. Fainting would have been less scarier. On Sunday I was able to stop the actual fainting. Used my ammonia inhalent, slapped her face a bit, and she was ok. But on Monday, after the doctors appt., my husband and I took her out to eat afterwards. She ate a great meal, and everything was ok.

I had hubby go cool off the car, as the day was so very hot and humid. While he did that, we walked towards the door to wait for him. We stood there about 30 seconds, and it began again. She got weak, sweaty, and ready to pass out. Sat her down, gave her juice, slapped her face, put water on her, and she was having a fit trying to stop me. So I figured, ok, this is good. Then all of a sudden, that was it. Totally unresponsive, but with her eyes open. Got the ammonia inhalent, and no response to it. (those things smell horrible) So I had the restaurant call 911, and off to the hospital we went.

They put an IV in her in the ambulance, and of course before we even got to the hospital, she was fine. They did blood work, and of course it showed nothing. Potassium level was good, and she was not dehydrated. They did an ekg also, and that was ok. We went home about 4 hours later, and she was fine. Full of energy. She stayed up until midnight. (I want whatever was in that IV)

Wed. she had another slight episode, but came out of it fine. Now Mom does have Orthostatic Hypotension which is brought on by a sudden change in body position. And has always gotten dizzy upon standing from a sitting position. But I had noticed that after she eats a meal, especially a large one, and got up from the table, that the fainting or near fainting was happening. That is called Postprandial orthostatic hypotension, which I did not know until Lori investigated it for me.

I'm going to try to make this very long story now short, but I really think in caring for the elderly, the doctors would know this and have a solution rather then me finding the info online. Lori sent me some info from a website on both of those conditions, and I have been experimenting. I had never heard of the Postprandial hypotension, and you don't know how many times I have told her doctor and the hospital that this happens after eating.

I have been giving her one Ibuprofen before breakfast and before lunch, and two before dinner as the article suggested to do. They suggested the ibuprofen, and I decided to experiment with the amount. And would you believe, no episodes. One night before dinner I forgot, and guess what, yep, almost fainted. I used the old standby of putting her head between her knees, as the article suggested, and she came out of it within minutes.

Also, caffeine is also not good, except before breakfast is ok. It causes blood vessels to constrict. On Monday, when we were at the restaurant, she had three cups of coffee. I usually would have gotten decaf for all three of us, but needed a zip myself, so just ordered regular coffee. Just wasn't thinking. And since it was one of the worst episodes she's had, I think that besides the big meal the coffee might have been what sent her over the edge.

These two conditions are very common in people with Parkinson's, which I think Mom is also starting, Alzheimers, diabetes.

If any of you are having any such problems with your loved ones, you should try to read up on this. I don't know the website that Lori found the info from, but if you want to know, post it on here and she'll let you know.

If I continue to have success with this ibuprofen therapy, I'm going to be taking a copy of what I have, and bring it to the hospital emergency room, and to Mom's doctor. Again, may be coincidence, but wouldnt' you think they would have some suggestions for you on what to avoid and what to do.

Sorry this was so long. But I felt it important enough to pass on to you all.

Jackie