I am waiting for the AL facility to call me back. I called Mom and stumbled into one of her melt downs. Same thing different day. Mom holds it together for a few days and then can't hold it together any more. She is tired... of her life. Dad gets upset when she cries and makes it worse. Then she can blame it all on Dad. Then he gets upset because he hasn't done anything. On and on it goes. The mention of separating them sends them both into a tail spin.
I called and Mom said Dad was on a rant about the car. Well of course he was because she kept saying she wanted to go somewhere else. He would tell her he could take her anywhere she wanted to be. Then she would tell him that they didn't have the car. Every time he hears that it is new to him and he does get upset by not having the car.
After talking to Mom for about half an hour I called the facility at 4:15. I had Mom on one phone sobbing and Wellness on the other phone. I requested their PRN antianxiety medication for both of them and that somebody go upstairs, check on them, and possibly take Dad to supper so Mom could have a break. I stayed on the phone with Mom for another 45 minutes and nobody came to the room. Mom was trying to get Dad to go to supper alone (he doesn't know how to get there) and was making no progress. I was coaching her to say.... we don't need a car to go to supper rather than we don't have a car. Mom finally got so frustrated she hung up on me.
So I called the facility back. Instead of talking to wellness I ask to speak to their case manager. I explained the problem to her. She said she was going upstairs, take the lead caregiver with her, and would call me right back. That was a half hour ago. I'm sitting on my hands and trying to give them time to do what should be done.
In the mean time I have made up my mind that I am calling the doctor tomorrow to talk to her about Mom's mental condition. Mom is so medicated that she is exhausted most of the time. Every time there is a big melt down she is just given more or new medication. From what I have read here, knowing that these melt downs became prominent after Mom started taking the Namenda, and my gut feeling, I am ready to insist that she be taken off the namenda and even the aricept until we can figure out if that is the cause of her mental distress. If not I will know that it is just her personality and deal with it but I need to know.... for MOM!!
I'm sorry you're having to deal with this, Deb. It's good that they're in a facility so you can let go of it and get your sleep! Let us know what the case manager says. I hope you told her that you waited for 45 minutes on the phone and nobody showed up to deal with this problem! Someone needs to be called on the carpet for that! That's what they're paid for! While I understand that they have a lot of people to care for, waiting for an antianxiety med during a meltdown for 45 minutes is unacceptable!
In the meantime, dear Deb, who has held towels for so many of us, hold onto the other end of this one (tossing you an extra large green towel, a nice peaceful color). Hang in there! You'll get this dealt with tomorrow with the doctor.
I wish I had words of wisdom for you, but I'm fresh out. It's been a long day around here, too.
It sounds like a good idea to change her meds, reduce to a minimum, and see how she acts then.
But my first impression when I read your post is that you are trying to be in too many places at one time.
I wonder if you should try to let go a little. Having Mom on one line and the NH on another, trying to dictate to her what she needs to say to Dad, (and her not getting it!) is TOO frustrating for all concerned!
Try stepping back and giving yourself this kind of a pep talk: "we are paying good money to have Mom and Dad in this facility. Mom called me to complain about something or other, as usual. I'll hang up, call the facility and say please check on my parents and see what is the matter. Then I will trust them to take care of it and not check every few minutes to see if anything has been done."
By this time tomorrow Mom will not know what it was about, Dad won't either, and nobody will be upset in a long lasting way except you.
I even think it is time to limit her calls. You can have a phone in their room that is only good for local calls, or only for receiving calls. You are letting her outbursts get to you and you are not able to do anything about it. Like Caroline in Canada while her Grandma suffers in Ireland, or many others whose loved one is far off, you are TOO involved in her day to day care.
I hope you will trust the caregivers to do their job. They are much better at ignoring unimportant outbursts than you are - they are not emotionally involved. They know it will blow over. I hope this helps you at all and you don't take it as a criticism, since I know you are doing it out of love and a sense of responsibility.
I remember quite a while back when I first visited here...Martha had given another poster some excellent advice that made perfect sense to ME...but not the answers the original poster wanted to hear. I felt so bad about the "flack" directed back at Martha....who was sincere in what she posted....and I know that's what she's doing now.
Those of us who have been dealing a very long time with the challenges of dementia/Alzheimer's look at this in somewhat of a different light than those in the first few years. It sure doesn't mean anything is taken lightly...or concerns/problems each of us face are not important!! Being farther into this journey...and knowing the twists and turns ahead...has given us a completely different insight. Perhaps we see a little of ourselves in your journey, and want to save a little "Deb" for future years!
This disease changes more than our loved one...it changes US too! As I read your post, I felt your frustration and true need to do everything you could to make your parents situation better...but, I agree with Martha...sometimes we just try too hard, and have to take some steps back to see where we're going.
From having 3 loved ones in seperate facilites with this disease, your description made me wonder how the caretakers, etc. were able to give you so much time. Please, please, please don't misunderstand me! During the first couple years, I spent much of my days trying to "make things right" for my loved ones also. There comes a time when we realize we just have to trust those who we have decided to put the care of our loved ones with.
There are other sisters. You've posted many times how differently you all think...and how differently the involvement is for each of you. You simply cannot do it all Deb! You've given great advice to many here, so I hope you understand the carefully written words Martha has posted.
We're hanging in with you...and can see your very real frustration! Sending love......Pam
Sorry dear friend to hear of this anxiety with Mom.......I wish I knew of something more wise and supportive to say. Martha is right, even mentioning me, that I am very involved in knowing how Grandma's day to day care is. You are the same.
The thing is, that while I completely agree, we have to trust the caregivers to know what they are doing....it's still hard to watch those we love when we know they are suffering. Its in our nature to want to do something, anything to help. My grandma's caretaker happens to be my Uncle, so when she suffers, then he suffers also. I know and understand it is "his" choice to walk this path with her, and I have to let him do that......but it's still hard to listen to it, and not be able to help. My mom as you know travels back and forth every few months. Right now, she's planning another trip either this month, or next, trying to fit it in between all of her own doctors appointments. She dreads the trip. The time she spends is exhausting, physically, mentally......it takes so much out of her, and I see that each time she comes home. But you know, she often says to me, that as hard as it is to "be" there, despite the sleepness nights, the incontinence, the crying and hallucinations.....there's a part of that which is "easier" than being here, making long distance phone calls every day. Because that "long distance" pressure is relieved. It's a double edged sword, it's a hellish task looking after someone with this illness, but it's sure hard being so far away and dealing with not being able to be there to help at a moments notice, no matter how much you know you love them, and do every single thing that you possibly can, from where you are. I think that as much as the caregiver makes the commitment to walk that path, so does the long distance loved one. It's just a different type of worry, but a path you take, and not necessarily one that's a "choice" to give up. I guess we just all do the best we can.
Grandma is barely eating these days, and is constantly switching back and forth from either sleeping constantly, or crying constantly. There are "rare" periods when her dementia isnt in full force. I imagine she must be certainly in the last stages. So, a few days ago, one of the "aunts" called and asked to see her. Uncle was upset at first to hear her voice, but called her back, and said if she wanted to see her mother, there was nothing stopping her. So after a "year" (imagine the awkwardness)...she showed up today. Of course grandma was sleeping, because that's what she does now. Her internal clock is backwards, and she sleeps during the day, and roams and hallucinates all night. So Uncle went out and left aunt with grandma, although she never woke up during the visit. This I was glad to hear, because it will dispell all the rubbish that the other sisters are saying that Uncle wont let them visit grandma. She called, and two days later, there she was. I am hoping and praying she will spend some more time with her....to relieve some of the pressure for Uncle and for my mom. I fear for Grandma, it may be too late and she wont recognize her, and therefore not get any comfort from knowing her daughter is there. I really hate this illness....it's so cruel and heartless to everyone it touches. I honestly dont know how her little body and mind is holding on.....
Keep us posted on how your mom is doing Deb.......I know it's hard to find a balance between being involved in caring for your mom and dad, and keeping an open and optimistic mind for yourself and your own family. The waters get so muddy sometimes but we just have to keep trying.
..sometimes we just try too hard, and have to take some steps back to see where we're going.
This is so true Pam.....it's hard for me to understand sometimes why some of us put ourselves through so much worry, and there are those who see their loved ones suffer and dont even blink an eye.
It is hard to step back and not be overinvolved, but at the end of the day, absolutely it is what keeps us from losing ourselves, not easy but we have to keep trying right? The balance that Martha talks about is very necessary if we are to keep going. Not easy, but certainly necessary.
Pam, also I wanted to send you condolences on your FIL.....sending prayers your way also...
Oh deb I know your really going through some awful times right now with your Moms rants. I'm so sorry.
Just my opinion of course..............When Mom was on the exact meds you are talking about she was terrible. I mean I couldn't handle her at all. She was short tempered, mean spirited and unwilling to do anything that anyone suggested. I was unable to calm her. This behavior changed in two days after the meds were stopped. It took a few more days for her to come back. She still had dementia but she wasn't ranting. She even said during this time that she felt as though she was losing her mind. "Something is wrong with me. I feel so weird. I feel crazy". Moms words. If your gut is telling you something, listen.
Let us know how you both are doing. I'll be thinking of you.
My grandma always grabs at her head also.....but oddly she isnt on any medication? I've always wondered why she does this. We thought it was fear, from whatever she was hallucinating, just wanting it all to "go away".....
Is it possible this is a dementia symptom I wonder?
We went through Hell this past summer with Mom lashing out at dad and myself. She was very combative out of control just down right mean. Always ranting and raving. Well, about 4 weeks ago I went to pick up her refilled prescription for Aricept. The cost of it was 183.00 dollars because of where she was in what they call the donut hole with the medicare part D. Anyway, I made my own decision right there that I did want the Rx. One I could not see paying that much money for a medication I was not certain even helped. So I discussed it with dad and we both agreed to stop the medication. After about 4 days I noticed she was much calmer. Not as combative or irritable yes, she has her days when she can be horrible to Dad but I believe that is just the way her personality has become towards him now. I really believe the Aricept is what made her be so awful.
Sometimes I think being far away from the situation as you are with your Mom and Dad can play havoc on you emotionally. It gives you a feeling of not having control over the situation and having to deal with everything on the phone with the caretakers must be very difficult for you. I think sometimes it is worse being far away then living right in the same home like myself. Sure some days I would like to run out the door away from all of this but being here every day living it I do have a sense of control and know what is going on and how to deal with it. I am sure it must be very difficult for you deb and not easy.
Okay Deb, I'm back. See I didn't abandon you and none of us will. We're all holding tight to the towel.
Carsam, one thing my mother did suffer from when she was verbal was spasms of the membrane that covered the skull. She always would say, she had a funny feeling in her head and put her hands on the top of it.
When the doctor prescribed Ativan (see one former message string where I said "Mother lived for doctor visits!"), I asked the pharmacist why it was being prescribed and he said that it was written for the membrane spasms similar to migraines. Well, I now know what he was referring to because I suffer from hormone related migraines and it feels like the two parts of my skull plates are lifting from one another.
So I guess all her life when she complained of 'funny feelings' she was referring to this. Now that she's not verbal, I'm sure the medicine exasperated those symptoms and she was grabbing her head and looking like she was in pain. I think it was making her foggy, or clouds her judgement and she couldn't verbalize it.
Love to all. Scared sh*tless over surgery tomorrow. Even though initial biopsy said its nothing, for the doctor to be so insistent on rushing this D&C, it has me scared that there's something wrong that they're not telling me.
Martha and Pam.... I understand completely what you are saying and thank you for saying it!!! I do know we don't get the "services" in Assisted Living that are provided in a nursing home. They do tend to call family when available to handle problems. Chris, Pauline, and Caring, I am hearing what you said about your Moms and the Meds. I have a note in Mom's chart for the doctor to call me when she returns and we will discuss taking Mom off the Namenda.
Now the rest of the story. I find out that Dad had a bad morning thinking he had an important military meeting and Sister 4 went over this morning because he was trying to leave the building. She went off to lunch with a friend. This afternoon when I talked to Mom neither Mom nor andbody I talked to at the facility said anything about this morning. I learned of it only after I had written my post from an e-mail Sister 4 sent before she went off to an evening with her friends. I did get a call from the facility to tell me that Mom's favorite caregiver had gotten Mom and Dad to supper and they were fine for the moment. They promised to call me is anything else happened tonight. I did that because I was aware that Sister 4 had plans.
I get a call mid evening from Sister 3. The facility had called Sister 4, instead of me, and Sister 4 had called Sister 3 who was at the facility. Dad didn't eat supper which is very unusual. Then there was another up roar between Mom and Dad. They think Dad has a UTI and Sister 3 is waiting for him to pee so they can do a urinalysis. She was probably going to spend the night because he didn't pee before he went to bed which tells me he is dehydrated. Mom was in better humor since somebody was there.
Then I got a call from Sister 4. She was upset that I had not called her. I explained that I had no clue what had gone on earlier except from her e-mail with a comment that she had gone out to lunch and was going out for the evening. I had been told by the facility that our parents were in the dinning room and fine. I had made a consious decision to not call her but to ask the facility to call me so she could have her evening out. Besides, Sister 4 had not called me either! She was NOT happy.
SO I lose and lose.... Next time I will call Sister 4, be accused of messing up her evening plans, and listen to her whine.
In the mean time Sister 3 is there, hopefully Dad has a UTI, and that will be that.
Yes, I am guilty of trying to do too much. I was trying to deal with Mom and Dad long distance. I was trying to save Sister 4's night out. I am impatient with the facility because I have worked in LTC and know what is possible. They know the weak link there is Wellness and have changed charges there twice recently trying to fix it. That is why I went to the case manager over Wellness. I still got the nasty phone call from sister 4.....
I hear you all and it's back off time. I have repeatedly said that the carbonated drinks need to be take out of Mom and Dad's room. They need drinks that hydrate not dehydrate because they don't drink enough as it is. They both have repeated UTI's so it's obvious they are not hydrated enough and Dad not peeing from before supper, (4:30) and when he went to bed at 9 is a clear indication of that. I have said this every way I know and every time I go back to their room there is nothing but Sprite Zero and Mt Dew in the fridge.
I am going to talk to the doctor about Mom and the Namenda. When I brought it up before Christmas I was told by Sister 4 that if I wanted it done then I had to talk to the doctor... and I will. I will probably get yet another nasty call when I do but that's ok. I am getting used to them.
I am much better tonight. I know I did what I could and made a sound decision at the time with the information I had. Perhaps I did try to do too much. I am taking into serious consideration what Pam and Martha have said...
under attack from all sides. So now I step in. Grab the towel dear sister and put it over your head and take a deep breath. slow down for a minute. Just sit down and breath. You are caught up in a knee jerk situation. Something happen and the knee jerks as we say. You can't be proactive when you are playing catch up on everything.
First, - I'm not beating you up. But remember, your parent are in ASSISTED LIVING. The staff there, while they are paid to help, are only assisted staff. The ratio of staff to family members isn't as high as if your parents were in a locked unit. And yes, I agree that that it was far too long a wait for you to have had..this might be the start of the look for another level of care for your parents. Unless Assisted living means that the staff is there to take them to meals every time and to attend to their daily life...i don't know.
Deb. You need to step back. Your Mom is consuming you. She is using you just as she uses your Dad. You have become her punching bag. When she gets daddy all riled up she then turns to you because she can get you all wound up and going also. Perhaps you need to make the call to their caseworker and then let her handle the issue. You are getting too involved in the problems from afar. Not that it isn't right..but it isn't always your turn...
Deb-do you remember me telling you about my mom getting so bad that we had to send her off to a psych hospital for two weeks? They took her off of all of her meds-except for her thyroid and her heart meds and aspirin. After three days they started her back on meds to re-balance her and get her to where she could function as well as we could expect within her parameters. She had become so over medicated by the PA-the one I fired-that mom was over reacting. That was when she threw those poor folks out of their beds at 2 am. This was not my mother's normal personality. It was the over medication that was causing her to reactiin such an uncharacteric manner. I man my mother would never have done that to people normally. At least not that I had ever seen. So her new doctor pulled strings and did an emergency admit as there was a 25 day waiting list for this place.
My point is that do you think that perhaps your Mom needs a purge of all the meds that she is on? Now it may be that she is getting to the point that there is no recovery-have you considered that also? But it may be that she is over medicated and it is also causing her to over react. Perhaps it is a combination of not only the aricpt and nameda, but all of the other "happy pills" that she is on. I sometimes think that they need to be evaluated to make sure that we haven't overdone it, or that they are interacting adversly with each other. They took Mom off of her namenda at that point also..positive results... But my own personal opinion is that your mom is being overmedicated here. She needs what cper's call a med holiday. At the very least a slight purge wouldn't be a bad idea. or at the least a good look see.
Your sisters, ugly and evil, need to step up to the plate and quit their vitchin. They were eager for this arrangement,so let them llve with it. Take your phone off the hook for a week and take a holiday yourself. Deb needs a break holiday. You play peace maker admirably well, in fact, I don't know how you it to be truthful. I guess God made me an only child for a reason, huh? The fact that they can't communicate shows how things get blown out of proportion-as in this last go around. You are the farest away, yet are expected to do the most with the least amount of notice, or why didn't you tell me? I just don't understand how they don't communicate or do.
But I am worried about you. Your notes have a frazzed tone to them and that stresses me. Do you think-and this hurts to ask-do you think that it is getting time to consider a higher level of care for your parents. Nice euphamism for NH, huh? Do you think that it is getting there sooner rather than latter? Is your daddy almost there now?
And I can't believe that there are sodas in their fridge. Who would put them there. they are terrible for people who are suceptible to UTI's especially older folks. Your mom and dad need the sport drinks like gatoraide..and apple juice and apple cider.
I am holding a big red towel for you my dear. grab on..it will get better somewhat. different, and it will change, you know that and the reality is that it won't be what you want exactly, but you'll struggle and make do because we have to.
remember.."What do we live for, if it is not to make life less difficult for others?"
IBAKE makes sense. I need to tell you something you need to do.
You need a back bone! -- no one can make you feel like s*it when they can't get the chance.
So, are you ready? Painful as it is, you need to write notes to Sisters. First start off by thanking them all for being Sisters of you. THEN you write that you don't intend to take the verbal abuses from anyone ever again.
It was amazing because I just had the big fight with Sister similar to this. I punched the wall in the kitchen because Sister sometimes makes it impossible for me to help her. When she talks she misses saying 'key' or 'important' things. OR she doesn't give me the chance to move faster than her and help her by bringing in the garbage cans or whatever.
There was numerous times in the past (month's ago) when she'd pop her head in and say to whoever was in the vicinity "you have to watch Grandma/Mom, I have to run out". No telling how long she would be gone. If Mother ate or didn't, or would need to eat soon or not. One day I sat and waited for her return. When she walked in the door, she said immediately "so what did Mom eat?" I replied "eat?, you didn't say she needed to eat". Sister got so mad, "Gosh, if I didn't do it, you'd never feed her!!!". I said, "Sis, when I poked my head in before, she was at the table eating what would make me think that she needed to be fed while you were out, you weren't out that long", she screamed "Oh my Gosh, I was gone 2 hours Caring and what you saw her eat was breakfast and that was at 10 a.m., now its 2 p.m. and she hasn't eaten!, I always give her lunch around 12:30 or 1:00.
This conversation caused me to feel like a failure to my mother, and also caused me very anger directed at Sister for making me feel like a jerk.
BUT then the menopausal woman in me, said "hey, you're the jerk, because you just say "watch Mommy, I have to go out and you just run out the damn door without saying anything or leaving any notes!".
At that point, I stopped my kids from watching my mother. Sister is her own worse enemy and you are all right from the other postings, she's not going to listen to anyone about anything BUT what does change things is when I ignore them completely. I'm not around so I can't lend assistance to watch Mom or be dumped on. When I call I stay on the line long enough to find out that she's having a bad or good day and to reflect that I care about her. I told Sister last night when we were discussing the 2 hours argument over eating that 2 hours of yelling isn't helping her at all. I said, I don't care about Mother but I care about this stress and what its doing to Sister.
I notice Sister was more receptive to listening to the nurse than anyone else. So getting back to you Deb! write notes and say "if you don't tell me info, you have no right to get all over me for getting calls from the facility".
And when you say "you are going out!" Just know I love you and care enough about you that I'm trying to give you a break BUT if you want to be the end all for every call, action, etc. YOU can have it all, I'm taking a Deb holiday and won't return and be involved for 14 days (2 weeks!) and then Deb
Call friends, go away, go to movies, take a short trip, whatever.