We are trying to get thru each crisis with mother in our own way. No one tells you how really hard it is to watch a loved one deal with Alzheimer's. You hear someone has it & you assume it just happens...you forget things.
Well, I am going to tell you it does not 'just' happen. It is not a slow & gradual process, either. It is a heartbreaking difficult journey for everyone involved. One day you notice your mother gets out of the car & doesn't know where you are taking her. Even though you just discussed this lunch all the way to the restaurant. She stands in the sun & can't figure out which way to go. She hides it with humor & you both laugh...the next day everything is back to normal.
2 weeks later her anger overwhelms you. Than she breaks down in tears, sorry for her words. You become confused & can't figure out what set her off. You walk on eggs for days waiting for another incident. Small things happen, nothing to set you back on your heels...but things that make you wonder what she is thinking. She sits in a chair & stares out into space, the vacant look in her eyes frightens you, but what do you do? You take her to her family doctor who prescribes a change in medication. You accept that he knows what he is doing & you go home hoping this will be the answer. It seems to work for awhile.
She doesn't tell you what she is going through & when you ask, she says she is just tired. (old & tired) So, you leave her alone to rest. She is, after all , 91 years of age & she probably is tired.
You discuss the incidents with your siblings & they have their own stories to tell...but you don't really connect the dots. The picture is not clear yet. You have heard of Alzheimer's & dementia , even know a few friends who have gone through it with their own parents. But still, no one has really told you what they have gone through. And she does remember times & places from long ago. But she is having trouble recalling names of people in her photo albums. (you do that yourself.)
You assume it is a matter of just finding the right medication, the right place & the right doctor. But that journey alone is a long road, with potholes & bumps big enough to send you over the edge.
You realize she can no longer live on her own & with much resistance you all come to the conclusion that assisted living would be best. You look for the best place, closest to some family & what she knows. She is not happy about it & you expect the move to be worse than it actually is. But now she is safe with people to watch her & you can sleep at night.
A few months go by, without incident. Then one morning they try to get her up for breakfast & she refuses. (wants to stay in bed & be left alone) She stops eating, can't dress herself, has small accidents & has to be put in diapers. The calls start coming in at all hours of the night...she is wandering the halls trying to go home & put her small children to bed.
You take her back to the doctor, you are referred to another doctor, more medications & still hoping this will work. Now she starts losing weight, gets angrier at everyone...becomes abusive to anyone. They try to keep her where she is & hospice is called in to help 'the end of life phase.' She seems calmer, with the added attention...but that doesn't last more than a few weeks & she is back to the abusive behavior.
Assisted living can no longer handle your mother. She has to be placed elsewhere.
But where???? She has to have a private room, she needs help with eating, dressing & bathing. No single rooms in the nursing homes nearby. So, you find a Home Care facility...no more than 6 beds. They have private rooms & she can still have some of her own furniture. (that should make the transition easier...) A caretaker, 2 nurses on call & a doctor. But family can't visit for 10 days. ('don't want to upset her more by your coming & going...going is the hardest') So, you take her in, saying you are just going to visit someone. She is eating dinner & you decide to take a look at her room..the nurse comes in & tells you to leave without saying goodbye.
(She will be fine & well taken care of...) But your heart is broken & you know she will think you just deserted her. The nurse says it is always worse on the families.
So, you go home...call every day to see how she is doing. They tell you she is a sweetheart & doing just fine. Are they lying? You ask if they are telling you the truth & they say 'yes, everything is fine'. She is eating & sleeping well. On the 4th day she becomes someone they have never seen before & you get another phone call..."come talk to your mother, she is out of control."
You have never actually seen her this bad before. You wonder what kind of hell is she in? What do you do now? Where can she go from here? You actually break down & the tears won't stop... for the torment, you know, she must be going through.
They suggest you take her to a psychiatrist. (You saw one 2 months ago). Maybe the Senior Behavioral Center at the local hospital, you already tried that & she was so distraught, after one night, you couldn't actually leave her there. The doctor said she could be treated as an outpatient. That should work...and it does for a couple of months. But now they don't want to see her anymore. And you know you can't take her back to 'that facility'.
So, they agree to do it for you...now you are left wondering what next? You can't see her for 7 to 12 days & what must she think of you, her children?
Should you actually try to bring her home & care for her yourself? She just beat up a 300 pound nurse,(this frail little 112 pound woman). You know you can't take care of her. You are in your 60's & running out of steam...
Where do you go, what do you do? No one can give you enough real information. But the advice & philosophy is never ending.
This is not a plea for empathy, prayers or even support. This is a plea to everyone, everywhere to start talking, especially if you have any real information.
Deann Landre
