30 days post nursing home...update.
It's been a month now and as the stress releases, my body detox's and I begin to find some energy that was seemingly lost I have found myself in a strange place.
For the past week or so I've been feeling this strange void...not an emptiness exactly but like this big empty silent room that has been closed up for some time and is a bit dusty, empty.
There is this feeling like something used to be in this room...a feeling that can't quite be touched...something that was set aside but moved out while I was busy somewhere else.
So I went searching to find what was missing.
It was the second week of December 2012 when my Mother arrived for a 2 month visit, we had decided that with what we at the time suspected her condition to be, we should have her for a couple of months to see how things really were, we had no idea how bad it was, what to expect and had no real experience with Alzheimer's at the time.
My family and I were doing really well, having spent the past 13 years prier in abject poverty, never quite able to pull out, until about 4 months before my mom arrived...when all of our hard work the prier two years finally started paying off.
Business was looking good, only getting better...we were high on life and started to actually make plans for the future in a way we could not have before...it was a good time.
We had goals and direction and a belief that we were finally making it!
Mom's official diagnosis came two weeks after she arrived when the final results came in from her CAT Scan...over the phone I had a conference call with her Dr in Canada, my brother and sister in law were in his office and we got the bad news...She had Alzheimer's disease for sure with a frontal lobe deterioration along side it, and to boot she had had it for a good 5 years already.
We had no idea ... no concept what so ever what the next 19 months almost to the day would be like...and somewhere in those 19 months the void happened.
It was about 6 months into mom's stay when we started to look forward to getting back to our life...we would dream of it, we would mourn it not being in our now, we reached for it and allowed it to motivate us to make it through the next stage, get over the next hurtle.
A couple of days ago, after I figured out what the void was I asked my husband if he had a similar feeling...he said yes he felt it to.
In some very real ways it's like waking up from a never ending dream and discovering that what you thought would be there at the end of it isn't, and that in fact you have changed so much and so have the people around you that you can't even really remember what it was you thought would be there.
My husband gave a different look at it...he said it was like we had three pieces of wire, three types of energy that had come together and it was a wonderful and powerful dynamic, but over the course of caring for my mom, two of those wires unraveled and fell away and we were only able to carry one through.
The wires are long gone, so there is no going back to what it was, but now we are finding more wires to add, different ones to start again...only this time better.
Of course for me the wire and energy analogy is a good one, I'm a lighting expert and wires and energy are an intricate part of my life. :)
So here I am staring at this empty dusty room and discovering again, who I am, what I've become and what do I want to put into the room this time.
Still a little dusting to do, but now I'm feeling a little excited about it...maybe some new paint to spruce it up as well!
I'll post about how mom is in the next post...not enough room on this one now!
i understand the emptyness , shannon but i think for now your caregiving hasnt ended , its only reached a different level . my aunt was sitting in a wheelchair with her feet not touching the floor , putting all of her body weight and the weight of her legs squarely on her sore behind . i discussed it with a nurse one day and in about three days my aunt had brand new footrests on her chair specifically designed to discourage her from trying to get out of the chair without help . im not pia but the staff still listens to any family member with a legit concern ..
I discovered actually when I took mom in that one of the reasons they do is because they are at home, so don't have that constant medical care like nurses monitoring their conditions and such and adjusting to suite.
Also there are a lot of nursing homes that medicate heavily so that residence sleep through the night and are not wondering around, they often don't have enough staff and many are not specially trained in Dementia Care.
Years ago...when we didn't even think we would ever have to place anyone in a home, I saw a documentary on different styles of Nursing Care, and the one that really impressed me was the Vista Group and the idea that patience really didn't need all the meds they were on (they still need some in cases) but that they would wean patients off of certain drugs.
They also believed that residence deserved the best quality of life, regardless of where they were at physically or mentally, so to that end they provide many activities, they sit down with all of the residence every week and they vote on some of the activities for the week.
The kitchen is open all day and while they have breakfast, lunch and dinner at certain times, if a resident prefers to eat at a different time...no problem.
They have food available to residence 24 hrs a day for snacks etc.
Also they don't regulate sleep patterns as many people prefer staying up late and sleep in, or like my mom have a 12 hr pattern, goes to bed early, gets up mid morning...so no sleeping pills!
Plus...they encourage family to visit any time they want, no calling ahead...24/7.
So like I said...my intention was that group of homes, but I had given up finding them, because I didn't remember the name of the home, but we were very fortunate and that is where she landed.
I believe this is how it should be...wish they were all like this. They have more staff per person here, and that may be because it's all dementia, but loads of registered nurses and aids. As I've said before, even the people that clean the rooms have to be trained with dementia...everybody is a caregiver and everybody know's the residence by name and helps them out...I LIKE that.
I guess for me...this is the perfect place for my mom...maybe not everybody else...some people like more structure, like the idea that mom/dad goes to bed at 8 pm and is up by 6 am...meds at this time, bath at this time. For me the freedom of the residence is a key to quality of life. They do have a lot of structure and they are encouraged to participate in as many activities as they can, but they are never forced to.
Quality over Quantity...this is our philosophy and the Dr's and Nurses at this facility have the same philosophy.
So if a med will make my mom live longer, but it impairs her ability to live a quality life...I say take her off...let her be as productive as she can while she can, what is the point of living the elder years if all you do is sit in a chair drooling because of the drugs you are on, when you could be interacting and actively doing fun things?
Anyhow...keep the faith and if you can, do it all before it becomes a panic situation where you are so frazzled you can't think anymore...that is my advise if you can manage it.
Because of the crazyness of actually getting her financing and such and working within the system because mom didn't have any money left by the time we figure her condition out, I was at the end of my emotional and physical rope, so we had to take what we could find...all the research was out the window...and yet it ended up being exactly what I had intended at the beginning.
What ever powers that be really did good on this...I am grateful.
I also realize however that things could change one day but I have some faith that she will be cared for well and live out the rest of her life as well as could be expected...definitely better then I personally can provide.
This week I have had two communications from my mom's home...the first I think I wrote about up top...but also received a call from her Nurse to let me know they would be taking her off one of her meds and she would let me know how it worked out when it was done. :)
Nice to know they are caring for her in such a way.
The second time was a week and 1/2 ago when I went down to drop off a couple of box's of items and have the first care meeting with the heads of staff.
That meeting went well over time and was very very good with half of them walking out saying they had never been to a meeting that was so fun...:)...which is good I think.
Still it was very enlightening for me and for them as they shared what they were doing and how things were planned out, some of their concerns after mom had been there for a few days and proposing some solutions, and me sharing stories about my mom and they types of behaviors she had at home.
I found out that they have these meetings every three months, so that was really neat I thought, not expecting anything like it.
It sort of reminds me of the IP meetings we have at my Son's school once or twice a year as we go over his progress and put our minds together to come up with solutions to problems and such.
The big issue at the moment is that Mom goes for the doors all the time, trying to get out...to escape. They of course are worried about her possibly slipping out with someone else and getting lost.
So they decided to try and curb her from this by putting her into the lock down unit where you can't escape with someone...double doors with key pad access only...so not much chance of it.
So she has been doing her day programs over there and going back into the regular side during supper and for the rest of the night.
It has been working out well, but she has not stopped trying to get out, so I received an email today asking if it would be OK to move her over there when a room opened up.
Also I got an update that she had seen the eye doctor last week, made a new friends of another lady who is also high functioning physically and in a similar place with her dementia.
My husband and I had actually taken the kids over on Sunday because they really wanted to see her, it was the first time since she left. So we had met her new friend.
It was really different...we went out to the court yard where she and her friend spend much of their time sitting in the garden swing and chat.
My mom told her that we were her family and the gal looked at me and asked if we were from the dark place...from the Black place. I answered...no we are from the light...so she said we were OK then. :)
For those that don't know, the nursing home my mom is in has a very low population only 61 residence and all of them are in the later stages of one form or another of dementia.
The home posts pictures every other week or so of activities that they are doing and mom keeps looking better and better all the time.
While she complains and wants out and is still upset about it, she is actually doing better then when she was here.
I've really found that so far the home is really open and there are no restrictions on family involvement or non involvement, and they are bluntly open about things and I have never been ignored or turned away or anything from any of the staff...they answer questions bluntly and honestly.
So far things are working out well...I am relieved and while mom may never completely settle in...she is doing very well.