And the saga continues with Mom. I received another phone call this morning from Mom. It amazes me how she can figure out how to call when she is in one of her bad times but not in the good times. She is known for her stubborn determination!!! Which might be a lot of our problem with her. Her 25 mg of antidepressant was upped to 100 mg. Her PRN ativan was made a standing order with an additional PRN. She seems fine for a while and then she melts down again. Today is a melt down......
She called and her first words were.... "I don't know if I am doing the right thing but I have decided that I am taking your Dad home. He wants to go home and I will be fine there." In reality Dad has adjusted amazingly well to his new surrounds. It loves it there "up on the hill" and the interaction with the staff and residents that he didn't have at home. He will tell me he doesn't want to leave there but if it makes Mom happy to go home..... That is the same thing he told me when they moved to the facility..... he is happy where ever he is as long as Mom is happy.
No amount of distraction deters Mom from her need to be somewhere different. She is stuck with stubborn determination. The ability to divert her focus was a critical deficiency in her cognitive testing so that is part of the disease. When she doesn't get what she wants she melts into hysterical crying and tells whoever she is talking to how horrible they are making her life. Then she hangs up the phone and continues to cry. I call the facility to alert the staff, request the prn meds, and call Mom back. She continues to berate me until the med tech arrives. Then I turn it over to them.
Today the med tech told me that she talked to Mom at 8 am and she seemed fine. Mom called me at 8:30 in distress. We can expect it to last most of the day so my sister has gone over this afternoon, not for Mom because she just has to get through it, but for Dad because he will eventually get upset with Mom and demand that she "fix" her problem. This only compounds the problem on both sides.
I know what Mom wants. She is a prisoner in her inabilities. She can not socialize with those wants to socalize with because of her limited abilities. She doesn't seem to "fit in". She doesn't see herself as being like those other "crazy" people. She has trouble understanding what is going on around her. She feels bound to dad and refuses to leave his side because she says he needs her when in fact it is she that needs him. When she has the opportunity to get out of the room she resfuses to go. Yet she KNOWS it is not her that is the problem. Therefore we have trapped her in that hell hole prison. Her desire to go "home" is truly her desire to go to another place and time when the fog in her head was not there. She will look you straight in the eye and with conviction and tell you that she does not forget and she is not crazy. Yet this morning she said... "nobody has come to see me all week and I have not been anywhere"... In reality sister 3 and her daughter were there Monday, she had her mammogram and went out to eat lunch Tuesday, another sister was there Thursday, I called her every day but yesterday and the sitter was there three mornings last week.
This is a consistent problem despite medication. I believe Sunday's are a trigger and a reason for today's outburst. She and Dad have gone to the same church since before I was a child. I have encouraged the sunday morning activities at the facility. She refuses saying they are not the same. I have offered to take her to a local church and be sure she had a way to get there. She again refuses and insist that it be HER church..... which is 2.5 hours away. That is impossible.....
Tomorrow it will be a flash of light she saw and she needs to go back to her doctor. The next day it will be a note from a neighbor that says "we miss you".... or a visit from a friend trying to be helpful and considerate. Sometimes we don't know what triggers it but she will dwell on something until she decides it's best to go home and then melts down when it doesn't happen.
She did the same thing when she was at home. Then it was about the burden of taking care of dad and not being able to do the things she wanted to do. She would call me with the same aggitation, angst, and anger. It all started.... when she first realized something was amiss and has only gotten worse no matter what we do.
I know the reasons, I know it is not going to get better until she gets worse and I know that all we can do is the best we can do...... But gezzzzzz... I hate to wake up to the phone ringing, that same impossible request, followed by tears and what a horrible daughter I am..... I go through the process each time (several times a week) in my professional mode and then I am left sitting here in the muck it leaves..... I think I need to go ride my bike a while
Well, Deb. You are so depended upon by so many of us for your warm, sage, insightful advice, that it's good for me to see that you still deal with all that we all deal with - on a daily basis. Not easy; not for any of us, but maybe, just maybe, you have it rougher than some of us.
I cannot imagine the push/pull/tug/shove feelings you must be experiencing. You KNOW you can't take mom home. And it's so hard when they look at you, begging, or call you at o-dark-thirty begging, and your hands are simply TIED with this disease.
As my 12 yr old said when he came home from my dad's with me the other night, "Uncool, mom. Just uncool. That's not grandpa." And he is right. Oh, the guy LOOKS just exactly like my dad. But it ain't my dad.
My prayers are with you. Hang in. And it sounds like you are 'bout out of towels...here's a pretty purple one (deb tosses towel to deb) - now wring it hard, yell into it, and toss it around your neck while you ride your bike. As hard as it is to believe, it really WILL be ok. Eventually. *sigh*
You know we're here Deb......unfortunately...there are too many of us sharing this fate...
In 2 of your posts now, I've seen you write something about "I know it has to get worse before it gets better"...and to those of us who "are on the other side" of the anger/scared/bitter behavior, this somehow makes sense. My Mom stayed in that a/s/b fragment for the better part of the first year...and it's so difficult to be part of. My MIL had very little of this behavior...FIL still shows it after almost 4 years.
My "Mom visits" for the last several years have tamed down little-by-little...her not even recognizing me or acknowleging my presence for the last 3-4. I guess this is the "better". Still very difficult...but honestly "better".
Such a sad thing that brings us all together............p
My world is definitely not coming up roses little deb but I do try to keep on the brighter side of the chaotic drama that can fill my day. If I can make a suggestion, offer a shoulder, or hold a hand that helps somebody else.... it is the least I can do because of all that has been done for me here. That's what gets me through the day. I also know that those moments when I am stretch thin that somebody here comes through for me. You are right.... that is not my mom. She has the same gray hair with the brown streak in the front that even she doesn't recognize.... but that is not the Mom I know. I need a new towel.. and thanks for holding the other end Last night and this morning were not good but the day is improving...
I am glad you understood what I wrote Pedal. Sometimes I feel bad after I type it but in my heart I know it's reality. I wish with all my heart that Mom didn't have this disease but she does. I know she is frustrated, scared, angry, bitter, and all those other words that fit.... and doesn't have the ability to deal with her feelings. As hard as it is for me I am sure it is more so for her. We have done everything we can think of to help and it just gets worse. This started when she realized something was amiss about 4 years ago. It was depression and dealing with Dad for two year. Then she was diagnosed and it got worse. She couldn't take it any more at home so they moved to the facility. It was ok for a while and then it all came back worse than before. No it is the facility that is at fault and us for keeping her there. I just want her to be at peace. I know her hard headed stubborness and know she will fight this disease as long as she remembers to fight. So yes... it will get worse before it gets better ::SIGH::: At least she is not crying this afternoon..... We will see what tomorrow brings....
I was not ready for this morning as I usually am. I spent some time last night with a friend who has medication induced depression, sever heart problems, out of control diabeties, and has lost their teenage children to an x-spouse with no house rules. While on the phone with Mom I discovered another friend's father had a heart attack last night and my best friends pregnant daughter was in a bad car accident yesterday (she will be ok)..... so my plate was already full....... The bike ride helped and I can not express to you what your understanding and kind words mean.... they are what I stand on when the ground gets shakey
There's not much I can say to you, you understand your own problems as well as you understand those you advise us on so wisely. Please remember, you can't fix everything. If you need a towel, I'll be happy to give you my brand new Care Bears beach towel. It comes with admiration, and a heartfelt prayer.
Dear Deb, Your mother will eventually adjust to being in this place. She will forget that she was ever anywhere else. She will probably calm down and feel content before you do.
I say this because while the rest of us were pulling our hair out and feeling consumed with guilt, my Mom was feeling fine in her little room at the NH. My brother dealt with the most guilt, because Mom fell down the stairs on his watch (while at his house) during one of her nightly wanderings. He thought if he had somehow managed to avoid that happening, she would have been able to remain at his house for the rest of her life, which was just over 2 years longer from that fall.
I tried to reassure him that she was not unhappy at the NH, enjoyed the company of other people and all the activities ... but she did remain wheelchair bound, and he blamed himself. (Why do we do this? Life happens, we can't prevent every disaster.)
He continued to visit her every day, only towards the end reducing it to 4 times a week.
Mom had a phone at her bedside on which she could receive calls but not make any. She had forgtten how to dial a phone. I wonder if such an apparatus would help keep your Mom from making her SOS calls to you, disturbing and worrying you, demanding to go home, etc.
Try not to add guilt to your already overwhelming situation. Guilt makes it worse.You love her and you did and continue to do what is best for both of your parents. You ought to feel proud of yourself for having done it so very well.
Dear Deb, I'm just like the others here. I wish there were an answer for you. I wish I could help in some small way. Of course I can"t. I reach out to you for your advice and your calming words. I'm sure just telling us your feelings helps you cope. I'm crying, constantly waiting for the next "thing" and trying to help "one" parent. I can't imagine what it must be like to have "two". Geezzzz, I would already be locked up somewhere. I'm not kidding.
I read your posts and try to say something that could help. I find myself sitting here with NOTHING coming to mind. Makes me feel useless. Like Q said "You understand your own problems as well as those of us you advise".
Mom is in a downward spiral now. I can't stop it. Can't fix it. I just try to cope with the daily problems she is having. God help us.
I hope today is better for you and your Mom. Grab a towel Sweetie and hold on. All of us who care about you have the other end.
Today is a somewhat better day. At least there was no hysterical crying when I talked to Mom but the basic conversation is always the same. She wants out of the confusion in her head....
I gave up on guilt a long time ago Martha. I do the best I can, with what I have to work with at the moment, and go on to the next moment doing it all over again. Sometimes I get frustrated with such an impossible situation but I know I am doing all I can and guilt is not going to help anybody. I reserve guilt for those times when I don't do what I know I should do! Frustration... now I have plent of that to go around.
Drew.... the only answer is to do the best we can. It is difficult having two parents with dementia especially since they are very different and feed off each other.... not always in a good way. Dad is normally good natured and all he cares about is making sure Mom is happy. Mom is not happy!! That gives a whole to meaning to the old saying..... "If Mom isn't happy, nobody is happy!" She spirals into her hysterical depression and Dad wants to fix it. When he can't he gets frustrated and responds inappropriately. Then she gets angry with him and responds inappropriately. At that point we have an old fashion street brawl on our hands. They have to be separated and then they both anguish because they are not together. Dad forgets and he's fine. Mom broods about it and works herself into another episode sparked by something trivial. And here we go again......... I did catch it early enough yesterday, get Mom's anxiety medication in her and my sister there before Dad because too aggitated with her. I know another one is coming.... just a matter of when. This happens at least twice a week if not more often. I just deal with it better most days
I had to laugh after it was all over. Hubby answer the phone this time because I was still sleeping. He woke me saying that Mom was on the phone and there was something terrible wrong. I just looked at him and ask.... "What did she say". He said she had a "Problem" she wanted to talk to me about and she was crying. I just shook my head and told him I had wake up and to go to the potty first, got my diet dew and protein bar, and then I went to the phone. He questioned what I was doing and I just said.... "This will take a while!". I guess I deal with this so many days that he's at work that he just doesn't get it. It was after it was over (2 hours later) being extremely tired and overwhelmed by all that had gone on the night before and that morning that got to me. True to form..... he left for the afternoon. He deals with million dollar jobs but my mom in distress sends him running for the bushes. You gotta laugh!!!!
Nothing useless about you Chris. You are dealing with a lot yourself and doing it well. Your words of encouragement were one more step for me to crawl out of the funk I found myself in yesterday. All of you are priceless special people with amazing caring hearts. It is nice to know that we support each other, understand each other, and are always there for each other. I took my turn Sunday..... NEXT!!
I just remembered something that did help out a little with my Mom. I do realize how differently each of our loved ones are approaching and responding to this disease....but when Mom looked at me with pleading eyes and asked "What is wrong with me?".....I took a gamble and actually USED the word "Alzheimer's".
Many times we held each other and shared tears...none of her other children would even try to talk to her about exactly what SHE wanted to know.
I stopped at the Alzheimer's Assoc. and picked up pamphlets written expressly for the afflicted person themself...and we read, then re-read everything we could. Did this make a difference?? Well...she still had lots of behavioral issues, but at least I was more aware of what was going on too.
My MIL Alzheimer's seemed much different than my own Mom's....she was often affected by UTI's along with it, and had a much more meek approach to everything........but, my FIL would NEVER...EVER respond to anyone discussing this new challenge in his life. He remains in a Med. CF and is a very tough person to be around.
Just like each of us has a different approach in handling ourselves in this journey...many trials and errors....and trials and successes will come about.
Thinking of you all daily....it's a long tough trip!......Pam
I wish I could just be honest with Mom about her illness. I know my Mom and she is terrified at the mention of the word Alzheimers or dementia. With my luck I would tell her and go through this BIG thing and the next day she would not remember. Its just amazing how they stay in denial. Her Mom and two sisters had dementia. She saw me struggle with Gram, her MIL, and she still doesn't say a word. She always said to never let her know. So I don't...
Oh she asks plenty of times, "Whats wrong with me"? I can see it in her eyes.....tell me anything but don't mention Alzheimers. I guess its how Mom copes with what is happening to her. I tell little white lies. Anything to put off telling her the truth. You know "You can't handle the truth". LOL
Anyway her uti is gone and every night the sundowners comes her way and the phone calls start. Last night there were 4 during the evening until I call the CNA's and have them tell her its time to sleep.
I hope you all have a good night.
Thank you for the suggestion Pam. I have tried that before and probably will again. Mom and I had discussions about Alzheimer and her diagnosis after her diagnosis. She had her Memory Assessment Research Service reports with her diagnosis on both of them. I have seen her reading them and then act as if they were about someone else... not her. Sometimes they upset her so I finally removed them. She now picks up pamplets at the facility about alzheimer and has many of her own. She thinks they relate to Dad... not her. Her Mom and several siblings had Alzheimer. She knows the disease. What I get back when I suggest that something she has done was because of the disease is... I may be a little forgetful but I am not THAT bad. Other times she denies it totally.
Occassionally I have compared her behavior to her Mom's. Yes, her mom was just like Mom is now. When she was raging about the care giver at home I reminded her of Nannie and her care giver. A few times that has registered for the moment but it didn't last. On a particularly bad day recently I held her face in my hands and made her look in my eyes and told her that she did have Alzheimer and that was why it was so difficult for her. She just cried harder. Chris... you are right about that fact they don't remember it. I do use it occassionally, if the moment is right, but she quickly forgets it.
As with Chris Mom... this was my Mom's worst fear. She also thinks she can do anything. She survived chemo and beat cancer. She's 79 and extremely healthy. She might have some memory problems but she will beat this too. Just ask her. For two or three years before her diagnosis, while she was hidding her inabilities, she was ordering every quack claim to prevent alzheimer or improve cognitive function. She spent hours working crossword and sudoko puzzels. She exercised with a mission. She did everything to ward off the disease and blamed her inabilities on anything or anybody else but herself. She's still fighting it. It's her stubborn determination that is her worst enemy now.
I do understand those dreaded phone calls Chris. You look at the caller ID and shudder with a shot of adrenaline because you know what is coming. I have actually talked to Mom on the house phone while I called the facility on the cell phone to request Mom's PRN meds. I find it amazing that Mom can't call me unless she's extremely aggitated.... it's never good! I hope tomorrow is a better day for everybody.
I just read your post from sept.08!!!!
I had no idea you have been going thur this for 3 yrs!
and I am whining because its been 17 months since dad first got ill
how long did the middle stage of dementia last?
I think for dad it was about 5 months..maybe
How old is your mom and how old was your dad when he passed?
my mother will be 90 in sept
she is getting very frail and alot weaker since last seizure
but still very fisty
I go to see in since the move back to her old care home yesterday
she is shaky and crying..
says she hates it there
I try to console her ..saying we wil find a place where she can be happy
so I come back after lunch and take her to Kohls to buy new shoes
she did well at the store...
I come home..take a walk and get back to car
3 calls on cell from her
total anxiety attack
Any suggestions on meds that might help her?
I told the caregivers no ativan..
unless extreme emergency
Re reading some of this stuff gives me the heebie jeebies. We have come a long way baby is all I can say. This disease has beat the hell out of all of us.
What is it you say, Deb? After dealing with Alzheimer's, nothing can scare us.
Seeing some of the old names from so long ago makes me hope they are all doing well and flourishing in their new life free of this disease. And since we haven't heard from them in such a long time makes me think they are living the good life now. That's a good thing.
They made it...we will too.
Chris, how does your mom do when you are not there?
Chris... I wrote that Mom had been at home a year and at AL a year... so that was already 2 years after he diagnosis in 2006. Give me 5 years with her already. Dad was diagnosed in 1998 I think and died in 2010. So that is 12 years for him. Try 17 years worth instead of 17 months Actually it's only been about 13 years but they doubled up on me for a while. Dad never really went through that horrible angst period. His frustration was with Mom and the fact that she was not happy after her diagnosis... until I achieved chemical contentment for her. Then he settle down... as long as he had his van keys in his pocket Mom was the difficult one. Her angst started at least 2 years prior to diagnosis and continued until her stay in the Senior Behavioral Med Unit. So it started in 2004 and lasted until 2009... the last two years have been content.... only because of the chemical cocktail she takes twice a day. The day recently that she didn't get her morning meds let me know that without the meds she is still in that stage of angst. Mom will be 83 in July. Dad was just short of his 90th birthday when he died.
There is a long list of medication that can be useful. Your best bet is a geriatric psychiatrist that specializes in dementia behavior. Don't just go to anybody... but one that knows. Mom is on Remeron and Zoloft for the "depression" and Depakote and Geodon for the anxiety. I do not like PRN, take as needed. If there is angst then there is angst and they need to be stabilized rather than put on an emotional roller coaster with PRN medication. When they get really bad we medicate them and then let them come back to really bad to do it again.... WHY? Trazadone is a good place to start. Some use seroquel or respiradol as well. At least one of my parents has been on all of them from time to time and more that I can't remember now. It's a trial and error to find out what works for them. You need a knowledgeable doctor that will cooperate with you to find her contentment.
As I said in my note from years ago.... It's not the place that they have a problem with... it's the disease. Moving them doesn't usually fix it.
Meg... it gives me the heebie jeebie jeebiezzz! Has it been that long! Yep, that is exactly what I say... if I survive this then nothing can ever scare me again! I think at this point I am on auto pilot! We will make it! We truly don't have a choice
Chris... is the facility taking your Mom out of her room during the day. Mom did better when she was out and about at activities and entertainments. If they ask her if she wanted to go she said no. If they just came and got her, insisting that she go, then she usually enjoyed it. They truly have a difficult time getting "started", but one they do it's better. Meg ask a good question. How is she most of the day. Are these episodes mostly at night or late afternoons? Does she call you herself or does the staff call for her? Remember... don't argue with her. Promise her anything in the future and then do what needs to be done, not necessarily what she says she wants. If this continues, please talk to her doctor about a good geriatric psych referral. I truly believe that emotional pain is just a debilitating as physical pain and should be treated the same