Dr said it's time for Mom to be in a home...now.
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.
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I realize that I am defiantly not the right person for that...I have to much past with her, even though I know she is different now and isn't even close to the same person she was due to the dementia ... it's hard to separate it.
I'm so glad we were able to get her into this group of nursing homes...they share our philosophy of care and do it way better then us!
:)
I won't go and see her till Saturday and will take down a few decorative things for her and see how she is doing.
My youngest really wants to come with me but I'm not sure if it would be good to bring her this time or wait a week...sigh.
At any rate still informing family members of the situation so many hours on the phone etc...but I'm feeling a bit better...still kinda have a nervous stomach and things...but I suppose that is to be expected.
I really don't feel bad about it, it's more all the realizations and emotional letting go etc at this point...also needing to catch up and get my business back in shape...instead of just in a holding pattern.
The kids have been out of their rooms and interacting with us WAY more just in the past couple of days!! I had no idea it was really because mom was here, but now I see it...sigh.
Thank You ALL again for the moral support...has really made this part of the journey easier to navigate through.
Of course...it isn't over and it might not be for many years...I don't know...but it is in a place now where we can deal with it more from a distance and that is a good thing.
I thought it would be OK, and very glad to hear it was OK after all!!
Don't be in too much of a hurry to get back to see your Mom. It would be bound to confuse her and she may get angry, making things more difficult for you. Take your time. Many facilities ask family to wait to visit for two weeks to allow the new resident time to adjust.
Had a good night sleep for the first time in as long as she has been here. Everyone got up at 730 am this morning...which is really unusual...like the kids and me and everyone had suddenly come out of a closet or something.
I think the truth is we have all been avoiding starting the day for a long time and now that she is gone...everyone is like coming out of hiding.
Anyhow...I'll write more later...now just taking some time...feel really tired...:).
They are saying another week!! But are seeing if there is any space in another home...sigh.
Mom is walking in one door and out the other...been 30 times in the past 5 hrs...minimum and only that much because she managed to sit through three episodes of Eureka today.
With freedom so close in site it's hard to be patient...it's like we are so ready...the kids are whining that we can't go out as a family, we feel trapped and it's almost like the guy that has the key for the door is walking really slowly towards the door...LOL...probably doesn't make sense, but then I don't think I make much sense some days anymore.
She has not been as aggressive this week, but is loosing herself pretty steady...a couple of days ago she went and got a pop, a diet Dr Pepper and she opened it and started dumping the pop into the trash bin.
We stopped her and said asked what she was doing...she said she wanted the Dr Pepper ...so she was getting rid of the diet part.
Today she found my husbands tape measure...she asked him what it was.
She didn't have a clue, but for the vast majority of 30+ years my mom designed and built restaurants and carried a tape measure with her wherever she went to measure rooms, furniture etc. It was an essential part of her work.
Sigh...I'm a little discouraged...but I know it will happen...just a matter of days again.
I'm starting to relax a bit, but there is a lot of emotion going on, so can't relax too much...I don't want to trigger mom into a rage or anything, which she will do if she sense's "weakness", or that my guard is down at all.
I will play it by ear with her the first few days...at this place there is no requirement to stay away, but they do warn that she will most likely be angry for a few days...so I think I will take a break. :).
(((Hugs))) Thank you.
The comment was in relation to caregivers caring for a parent that was their childhood abuser.
The issues that we as the adult children with previously abusive parents is different to a degree in how it effects us and how our parents treat us.
So yes Alzheimer's patients do have violent and angry out bursts, but how it effects a caregiver and how intense it is depends on some things like how the parent treated the child growing up.
My mom for example is angry with me for making her bath and change her depends a couple of times a day and making her clean herself up well after an accident...which she does not realize she has had. She can't feel it or smell it and does not understand why she needs to clean up.
So a few times in the past few weeks she has raised her hand and got that look in her eyes that I remember as a young person, she was going to smack me...but I stop her before she got to it...I can feel it coming on which is a survival instinct that never really goes away.
The difference is, she would never strike someone else in this manner, not that she would not hit due to dementia, but there is a difference. She had never and would never do this to my husband or a stranger...only to me.
She was a sociopath prier to dementia and her strong personality traits were enhanced by the dementia's...so while in many ways she is now in dementia reactions, she still does things and says things almost like an automatic response to me and will not do things or react to my wanting her to change her cloths because she wet herself in a way that isn't cool...she is belligerent to me, but not to others.
It is hard to explain, but ultimately many strategies do not work for her...and this is true for others as well.
So my comment was that the people I've spoken with at the Alzheimer's association are very helpful and very knowledgeable, but non of them have dealt with, to their knowledge a situation like the unique situations I find myself in at times.
When I explain it to them...they are puzzled...but then the light bulb ends up lighting up and they start to understand, but the situation isn't as common so there is no special counselling for those of us that have these situations.
I'm not sure if this makes any more sense now...:). But I hope so.
I went through similar situations with my parents, but our situation was such that NSGhome care would have killed them... and our family was brought up overseas, to care for elders at home... Since my father forgot his 2nd language {English} the 3 days he had to spend in a NSGhome, during Mom's surgery, just about killed him and me... he went downhill so fast there.
However, I copy/pasted your Alz-Assoc. remark below.... which really left me wondering about the training this person really had .... Your Qoute now below::
" 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..." ????
Are you saying that the Alz.-Assoc.counselor had no experience with the "angry Stage" of Alzheimers..... That is unbelievable... The progression of Alzheimers, always includes a stage, fairly early in the stages, where unhappiness, nervousness, contrariness, anger, and hitting, and sundowners, do occur. !!!!! It does depend on the individual personality, how bad these stages get... In my father's case it got so bad once, I had to call 911, who could not get him onto a stretcher, and they had to call police for help to manage him... and get him to the ER. Since I called 911, he blamed me for all, and threatened me. He was put on Halcion, and kept in the ER till that calmed him down, after which time I could take him home, and he totally changed, on that medication, but almost stopped eating for 4 weeks, lost @ 30 lbs, but eventually could be on a very low dose of Halcion, and regained his composure and his usual sense of humor.... That was a h.... of a month, considering I also had an almost blind mother with late stage Parkinson's and cardiac problems to care for, who had osteoporosis, and had just broken her wrist.... That's when the Alz.Assoc. did their interview, along with Elderly services at the same time. and the 2 services gave me and even arranged for some of the help I would need to care for both parents at home... I guess I was very lucky !!!
Yet I cannot understand that any trained personnel would not know about the different stages of Alzheimer's progression... I hope they are aware of that stage in the home your mother is now in... Do quiz the personnel about their training and experience, as you visit there.... and I do wish you all well !!
It is not over yet, but becoming manageable. Let her settle in and only visit when you can tolerate it. Certainly give yourself 2 weeks at least. The staff are paid to deal with her. (((((((((hugs)))))) you are doing so well!!!
Relief.
Ya...I actually wasn't thinking about that whole two week thing, but I was actually going to tell them I needed at least two weeks to start recovering myself and they could call if they had any questions or needed me to come down for some reason.
I'll let you all know if we got the room for her...feeling good about it, but I don't think the tension will ease until I'm sure.
The way things have been going it's like you have to make sure it's all in writing otherwise who knows.
:)