It's been a couple of weeks since I posted anything significant. I've been trying to digest what mom's Dr advised me to do.
We had an event about three weeks when we went to a shopping mall we had never been at before.
It was an inside outlet mall that is really large and we were looking for some shoes for me as I had to go work at a trade show in Vegas and needed some good shoes.
So my husband and 3 almost 4 year old were there and we turned our attention for just a minute and she was gone! (my mom)
My husband went one way and I went the other ... and an hour later we found her.
She was very anxious and while she said...oh no I'm fine, she was wringing her hands and had a wild look in her eyes...it scared her pretty bad....and us too.
So this set her off into a world of anxiety and nervous energy, she was wired and couldn't stay still...she kept going out the front door, walking down the block and and then coming in, begging us to take her out, then walking out the back door to the deck...then walking back in...begging us to take her somewhere, then walking out the front door...over and over and over again.
One of the main issues is that it is very hot out and she was overheating, but she can't feel it...so we are forced to make her stay in for a time and she would get really angry...on the verge of being violent.
I called her Neurologist and got her in the next morning, which was amazing because usually it takes a few days to get her in.
During the appointment he always asks her how she is doing etc...of course she always answers that nothing is wrong and she feels fine...her brain no longer connects the dots and she really does not understand that anything is wrong at this point.
Then he asks me what is going on while she is still in the room...which I've come to understand and frankly she forgets we even went to the Dr within a short time, so anything I say is momentary in her memory.
I told him what was happening and our concerns about her health and we are really concerned about heat stroke and her getting lost or something of that nature.
Also that we were concerned about her aggression, especially with the kids.
During the conversation my mom sat there glaring at me and saying she didn't like being treated like she wasn't in the room...of course we were not, and I was making eye contact with her and including her in the conversation but she was mad.
She even gave me the finger at one point! LOL I'm laughing because it is just so odd dealing with the dementia. (My mom has Early Onset Alzheimer's and Front Lobe dementia at the same time.)
After he prescription to try for the anxiety I asked to speak to him privately.
The reason I asked was because I've had an idea to form a support group specifically for adult children caring for their childhood abusive parent with dementia. So I wanted to know if there were any studies done or being done around this situation and or if he knew anyone that was doing this very thing.
He said that I could join the Alzheimer's support groups, so I had to explain in more detail that the issue with the Alzheimer's association groups as I'd spoken at length with several support people and one that was a top councilor that puts together groups etc have not run across these issue that they were aware of in the groups.
The issues being that as caregivers we have a unique issue with our parents, especially that the old behaviors our parents had are increased and it does not seem to matter how much healing we've done in the past, their presence in our lives tents to reopen old wounds and plays havoc on our emotional and mental well being in a way that isn't the same as someone that is caring for a parent that was loving prier.
Once I explained in more detail that I wanted to start a group to support those of us experiencing this unique situation he gave me some great suggestions...but then he started asking questions about whether or not I'd considered a nursing home.
I told him that I've been given the run around for the past 6 months from Medicaid and only have managed to get her basic medicaid and that I keep getting sent here, or there and it will be 3 month, or longer to get her in etc etc etc.
He told me it was time for her to be in a home not just for her own sake but for me and my family...he was very firm about this.
Then he told me that I should take her down to the emergency room and tell them that I can't care for her any longer and walk away...then they will get her into a home right away.
It shocked me...and I was like...what? I knew I could call the police and do this if she got completely out of control, but the emergency room I didn't know about.
Argh...I've run out of space will have to continue in another post...I'm writing a book here...but I want to be as detailed as possible.
So I'm not going to write it all over again...will recap:
- Thank you vstefan for your encouragement.
- Glad, I managed to find a Blue book today...thank you for that reminder...will be making calls tomorrow.
- Mom is defiantly forgetting us...the only person she calls by name is me, and even then it isn't that often...she completely zoned who was living in our house today coming to drop off some starbucks before going to another store. She just said "are we dropping these off to those people in the house?"
-I've dealt with A Place for Mom...nice lady helped me a lot, but only had suggestions to places that were private pay only or private pay for two years before medicaid.
K...nite nite all...Thanks everybody for helping make all of this easier to deal with.
If I drop her off at Emergency she could end up an hour away...so that would limit my ability to monitor care and be there quickly if there was an emergency.
Saying that...it might end up that way anyhow! :)
Sigh...this sucks. :( lol sometimes that is just how it feels.
Well if I get a chance to go to the chiropractor tomorrow I can drop by the seniors center and see if they have a Blue Book...I've heard of them when I was researching a few months ago.
It will be about the only time I can get out without mom...she knows she can't come to Dr's appointments with me (she still puts up a fuss mind you) .
Can I scream now? Oh probably shouldn't it's like midnight...LOL...I might get some flack from the husband and kids. ;)
Hope you are successful!
So I guess tomorrow I will be calling around to see who has openings...then I suppose I'll be going out to visit them...I'm tired just thinking about it.
In the mean time things are getting worse with mom...but still manageable. :)
I had decided that I'd give them three days to call...and then I was finishing up some work and decided I would call after I finished the email and the call came through.
Good thing I tend to talk things out because as I was talking to him he was telling me that they were coming in to access what services she would need and how much she can do and can't do etc etc.
I said well...you know she has dementia right? He was like oh no I didn't know that. I asked if there were notes on the intake about what the Neurologist told me three weeks ago? He said no there isn't. I told him and he was like...OH...I just have that we are assessing what services she needs in the home, to help you out.
So I clarified to him about her condition and the issues at hand and that we don't need them to check to see if she's ready for a nursing home...we need him to do the intake to get her in a nursing home within a week. :)
Anyhow....he had to call another department that usually does that and see if he should go ahead with it...and called me back and said...yes he will be by on Monday and bring the paperwork and depending on how mom was would ask the questions or just get the signatures and call me when he got back to the office to finish filling out the paperwork.
Sigh...never leaving anything to chance with these guys...LOL. So the guy sounds really nice so I'm not worried about it...but glad I caught that or we would have been delayed again.
My brother would have had her in a home a year and 1/2 ago...my husband has no problem with it either...it's me.
My moms sister is actually the only one in the family that will freak about it...but I don't care...she absolutely can't handle the situation and has been no help at all.
Everybody else is just fine with it. Sigh...I've had an emotional day with it...I think I've been holding my self so tightly this past year and half that now I'm just starting to feel again. :)
OH...and great news about the funding...I actually read that somewhere...maybe on his facebook wall about the extra funds. I really like what Hickenlooper has been doing for the most part...hope he gets re elected.
Just saw something in the news that Hickenlooper signed a bill to get more mental health facilities up and running in the state.
We have a Catholic Hospital close by that I've taken mom too a couple of times due to stroke scares...she never did have a stroke but rather it was the dementia that was causing the issues but they have her files and her latest CAT scan so she is already flagged there.
Also her Neurologist works out of the Colorado University Hospital and I can take her there with out a problem...they have all her files and direct contact with the Dr.
Glad...I am glad you are here btw.
I hear you loud and clear and I know I am walking a tight rope with this...I'm doing the best I can to make this as un traumatically as possible for mom...but also for myself.
If I need to I have myself convinced that I will take her into the ER...but I have to go the route of SS for my own sanity and that of my family in order to say I did everything possible ... so this is what I'm doing.
It all hurts my heart so much...that we are here in this situation...no matter how horrible my mom was or is at times...I can't hate her...I do love her.
I recognize that she suffered from a mental illness in her life...and while I've never been able to forgive her for everything...much of it I at least understand...and as heartbreaking as it is for me...I have a certain amount of compassion for her.
Mostly I am finding compassion for myself and being able to love me and my life and my family, and it is in this place that I find myself...doing my best to be careful and do as much as I can to limit the trauma.
I have taken the last three weeks to come to terms with the possibility of taking her to the Emergency room...so I will if it becomes necessary and the case worker has not been able to do something in a timely fashion...like in the next week.
This could easily back fire on me and I know this...like I say it's an emotional tight rope act.
I am in Denver too, get her over to one of the hospital ER's I would not put it off any longer. Do not give them your phone number, they will guilt you into picking her up!
It's been a busy couple of weeks, had to go out of town for trade show for work, then three birthdays including mine and fathers day.
My husband and I decided to wait till today to call in and see if we can get a rush assessment.
So I did this morning call the Access point for our area and explained that I've been working on getting mom into a nursing home for over 6 months and the best I've been able to get is regular medicaid ... told them I'd called them and gave them all the information over 3 months ago and called back and did what they advised etc etc etc...but bottom line mom's Neurologist told me to take her into an emergency room and drop her off three weeks ago..and I don't want to do this...but it is urgent she get into a home within the next couple of weeks.
I explained what was going on and how it has gotten to a point where we can not handle the situation appropriately and mom is getting so much worse and we are dealing with potential violence and that I didn't think we should have to wait till that happened before something got done and I was through waiting...it had to happen now.
:) so ... a case worker will be out within 10 days to do the assessment and they will get her into a home asap... :).
I was very clear that the Dr said she should be in three weeks ago and I had put it off...but if something didn't get done I had no choice but to do the emergency room route and I absolutely did not want to do it..but for her and our safety I would if necessary.
Sigh of relief .. they took me seriously and something is going to be done finally!!
I'll let you know how it goes...I'm really hoping that nothing bad happens in the mean time...fingers crossed it will go well.
I've never had a bad situation with a social worker before in this State, but you really have to push to get anything done.
I really really really appreciate all the support...it has helped me deal with this in a positive light. Thank You...Thank You...Thank You!! (((Hugs)))
"We tolerate behaviors that most can't because we learned how to tolerate them. I don't know if that is a good or bad thing -- maybe a little of both. "
Well said and it's exactly right. I do think we have coping skills that most do not, so it can be really bad and we deal with it, while others could not.
It is a double edged sword of sorts, these skills can be good, but then I think it becomes more difficult for us to really own that what is happening is over the line.
The Dr nailed me to the wall on this when I was speaking to him...that I have a difficult time saying..."I need help" ...and I almost always try to help others ... and it helps me but, I have a really hard time accepting that I need the help...hmmm I don't know if that made sense.
Anyhow...thank you for your response.
I am so glad you are going to get a social worker in to help you work through what is available for your mother. It might be that, if phrased correctly, she will get on board with the idea of moving to a facility. She might not remember day to day, but even partial cooperation would be wonderful.
As others said, you are not abandoning your mother as she abandoned you. You are making sure that she is receiving the best treatment available. With Alz and frontotemporal degeneration it will become worse, so protecting your family while helping your mother is ideal. What I hope is that it goes smoothly. When you are going through the steps, just keep reminding yourself that you are doing the right thing for everyone involved. Big hugs to you.
Thanks ba...I know that it's true what you say in my mind, it's my emotions I have to try and convince.
I think I've tried to be so not like my mom all these years that it might be something that is ingrained in me not to do...I don't know...figuring it out...:).