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Just to grumble
Internal Administrator
Posted: Saturday, January 7, 2012 7:03 AM
Joined: 1/14/2015
Posts: 40463


Originally posted by: Maggie F

I read the inspiring posts at this site and I gain so much from them.

Sometimes a grumble can clear the air. I apologize to anyone who hoped for something better.

I am so tired of watching my ADF "cleaning" his dishes with tissues when he is done eating. Of him brushing all the crumbs around the place where he eats onto the floor and him tracking some of them into the living room and onto the carpet. Of him urinating on the floor right in front of the toilet, and there is plenty of contrast between the white toilet and the dark floor. Of him asking a dozen times a day if there is any coffee and is it hot. Of him touching the outside of the insulated carafe we keep the brewed coffee in to find out if it is hot. That's not the end of the growing list, but the others would be too embarrassing to him if he still understood what he is doing. But it's as far as I'm going to go because I probably contribute to acid reflux every time I think about these things, and I don't like pills.
I'm really tired of Alz.. Not my ADF. I want to kick Alz. out of this house, out of this country. To put it into a capsule and have an astronaut eject it from the space station. To have God toss it into a black hole.
I'm tired of Alz., and all it does to him, to me, to all the other people it visits.

Grumble done.
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: Maggie F

A scare today. Phone call from the NH about dramatic changes that could point toward last days. But it's Alz., so maybe a "freak of nature" type day. I'm hoping it's the latter, but reminding myself it might be my ADF's path to travel. The rest of the week was so different.
I'll go to bed and put it all, me too, in God's care. If the phone rings, God will guide me.
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: Maggie F

Behavioral interventions were used by very experienced people and they were hit, head-butted, bitten, and other violence acted on them by my father. I would hope, Jim that you would be appreciative of the damage that Alzheimer's does to the brain is the same eventually and yet different in it's idiosyncratic pattern for each person, and the damage to my father's brain at his "stage" of the disease is preventing him from perceiving anything real.
I am so happy for you that Jeanne was able to respond to your efforts, but to say that people are not doing things right or long enough or with enough expertise or caring is like saying all cancers respond the same and no one ever needs to die if some are saved. It is denying that Alz. destroys the physical brain's functioning, and it does.
I do not doubt that you worked long and hard and with love to make Jeanne's life the best it could possibly be.
Please understand that I know my father better than you do and that he is in a very good residential special care unit.
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: Johanna C.

Dear Maggie: I am sorry to hear of the death of your dear father.

It is good to hear that his passing was peaceful and without struggle or strife. I send you a soft hug and wish you solace and peace.

Johanna C.
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: Jim Broede

An adventure into adversity can be rewarding. That is, if one finds a way out. And learns from the experience. And makes for a better life. Adversity doesn't have to last forever. --Jim
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: Maggie F

Another weekend is half over. My sibling hasn't visited since July. Including 2 visits in one week then, he has been to the house 5 times in almost 2 years; he lives 4 miles away. None of his 5 children visit. Two live within 7 miles. One comes to sell things, one came as part of his job, not as a willing visitor. I wonder how my nieces and nephews think their children will visit them, or their grandchildren will visit them if this the example they provide to their children of a relationship with a grandparent, the only one they have living. What is wrong with people... is it all self-interest?
I will have to leave the funeral home if, at my ADF's funeral, any one of them says they regret not visiting. Or "gee, I wish I had visited more". Those will be hollow words. None of them are handicapped physically and have to wait for someone else to drive them here. They have cars, money for gas. And still they do not visit.
What a sad state of affairs.
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: Mercy Grace

First time posting in this forum. Jim, I love your last line. I must admit that when I am stressed, sometimes I use humor and sometimes I use grumbling. I prefer humor. It makes me feel better for a longer period of time than grumbling ever does. But it sometimes seems only grumbling will do.

From now on I will strive to remember that humor does indeed divert the need to grumble. I am sure those around me prefer my humor over my grumbling.

Thanks for the wake up call I needed today.

Love and Peace,
Mercy Grace
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: ValRe

HI, Zotsie. I read here, too. I think that God, if this Being knows our hearts, knows what is behind the grumbles, which is love mixed with a lot of other stuff.

Namaste.
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: Mimi S.

Hi Julemyr,
Welcome to our forum. We're so glad you found us.
Caregiving for an Alzheimer's patient once they are where your mom seems to be is not a one person job.

Please find the Alz. Assoc. Chapter (hit chapters below) and the Office of the Aging in your county. Find out what services you can get.

Is there an Adult Day Care anyplace that you can get her to.
Can you hire some help?

Is it possible that she can be placed in an Assisted living Facility. Only look for those with a dementia unit in place.

Do come back. There are many knowledgeable and supportive people here for you.
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: Julemyr

I am a new member to this site, but I knew it was time to find some support.

I brought my mother here to our home in Ohio from Florida close to a month ago. She was living with my oldest sister and was absolutely lonely, miserable, and feeling quite unloved, frankly. My sister, who is constantly depressed by nature, was having as difficult of a time as my mother. Not the place you would want to vacation.

I fear I will turn into my sister...I am beginning to resemble the me I was when I had an infant to care for. Getting my "me" time at the wee hours of the night, worrying constantly about what she will get into next, drug administration is similar to the 2 hour feedings. Like the all too honest young child, she insults, without meaning to, when she doesn't prefer the lunch you left work to bring to her, just so you knew she had lunch...and then she follows up with "I just don't want to be a burden". If you aren't crying, you definitely want to scream. I'm waiting for something that will make me want to laugh, but it is not coming...Calgon take me away!!!
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: Jim Broede

Here I am, Maggie. A relative stranger. And I'm visiting you. Because you've reached out. You've let me know that you appreciate a visit. That's a good start, isn't it? See. It often does good to cultivate strangers. There are billions of 'em in this world. But they all don't have to remain strangers. But first we have to venture out. And not wait for people to come to us. When I'm on a plane sitting next to a stranger, I almost always strike up a conversation. A meaningful one. Because I'm curious. I want to know something significant about that stranger. I want to feel I've left that plane with a real encounter with another human being. The sad fact of the matter is that sometimes our own parents and spouses and children and grandchildren and nieces and nephews and cousins remain strangers. We shouldn't let it happen. --Jim
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: Jim Broede

I find that many grumbles go away. Magically. Especially when true and abiding love comes to the surface. --Jim
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: Jim Broede

I have a feeling that something wonderful is gonna happen in your life, Maggie. Give it time. --Jim
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: Maggie F

I don't know how to lighten up this grumble. My ADF is attacking the staff when they try to help him. I know that his broken brain is not seeing them as being his assistants, but rather as people who are in his space, trying to get him to do things he dosen't understand or can't understand the need for. They have been so kind to him. I know that they know this can happen, but no one should be head-butted while trying to help someone.
I don't really have a question. Just needed a witness to the problem and my own helplessness in it.
Thank you.
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: Jim Broede

I happen to think grumbling is very good and therapeutic for people who have a need or compulsion to grumble. It's a nice outlet. I don't have a particular need to grumble. But I like to come here to hear grumbles. To gain insights. Understandings. I personally like to avert my own grumbling. And go for alternatives to grumbling. But that's just me. I like to see other people grumble. Because it's mostly good for them. Whatever provides relief. I'd rather go out and exercise. Real hard. Rather than grumble. But again, that's just me. I'd even rather read a good book and divert my mind that way. Or converse with my true love about the nature of true love. And I also find that I have less reason to grumble when I hear other people grumble. Often, it makes me think I'm blessed. To get through a day without having to grumble. But golly. One thing for sure. If I have a need to grumble, I'm gonna grumble. And nobody is gonna stop me. I won't even mind if people begin to call me Grumbling Jim instead of Crazy Jim. Another thing, I find that humor diverts the need to grumble. --Jim
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: Jim Broede

I don’t believe in sweeping anything under the rug, Maggie. Instead, I believe in dealing with life’s issues. Effectively. In every which way. Sometimes, that takes time. Things evolve. Often slowly. But let ‘em evolve. Take the time. Often, with your own impetus. Other times, change happens. For the good. Naturally. Like magic. Like a blessing from heaven. From the divine. Divine grace. Meanwhile, it’s all right to grumble. Especially if that brings you relief. Some satisfaction. But I ain’t gonna grumble just for the sake of grumbling. To each his own. --Jim
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: Jim Broede

I like this thread because it teaches me about the fine art of grumbling. And it is a fine art. A good relief valve for frustration. And that's what we have with Alzheimer's. Ample frustration in our care-giver roles. Thank you for starting the thread, Maggie. It was a good idea. --Jim
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: Jim Broede

I like to think of the world as a safe place. Sure beats living in fear. Maybe it's that I don't know any better. But I've found that wherever I go, it's been relatively safe. And often an adventure, too. And I've met some of the nicest strangers one could ever meet. --Jim
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: ValRe

I have been reading this thread from the beginning and I don't get the impression that Maggie signs in unless she needs to. 17 or 18 grumbles since she started it last Oct. leads me to think that.


Namaste.
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: Jim Broede

I think Maggie has a very good idea, Cherie. It'd be nice if someone filled in for you at the nursing home for a few days or even a week or two. So that you could get away and refresh and rejuvenate yourself. You deserve it. Really, all care-givers do. And when you returned, you'd be a more effective care-giver. Respite. Respite. Respite. We all need respite. A chance to reconnect with life in positive ways. No more need to grumble. --Jim
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: Jim Broede

I used to grumble over Alzheimer's, too, Maggie. Still do grumble. Over lots of things. Especially over political, economic and social matters. But more and more, I'm learning to accept the things in life that I can't change. And if by chance I can change 'em, I do. It's been almost 4 years since Jeanne died. After a 13-year sojourn with Alzheimer's. I still fondly remember my almost 40 years with Jeanne. She did many of the same annoying things your father does. But golly, that all seems like very minor and trivial stuff now. It also pales in comparison to the love and joy Jeanne brought me. And that's what you'll remember about your father after he's gone. His spirit will live in you for the rest of your life. Meanwhile, life gets better. I have an Italian girlfriend. Her mother died of Alzheimer complications in August. I'll be spending the winter with her in Italy. And she'll be with me in Minnesota for the summer. It's our Alzheimer's connection that brought us together. Three years ago. So I'm not grumbling about Alzheimer's. I have reason to be thankful. Because life often evolves in strange and mysterious and blessed ways. Maybe it will for you, too. Give it time. And be patient. And grumble when you have to. And savor the ultimate goodness of life. -Jim
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: Jim Broede

I thought I'd try to grumble today. But to be honest about it, I can't find anything to grumble about. Can anybody help me? I wanna grumble. And for the life of me, I can't get myself into a grumbling mood. Help me. Help me, please. Give me something to grumble about. Maybe that's it. I'm grumbling that I can't grumble. Tell me, is this a legitimate grumble? Sounds kinda fake to me. --Jim
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: Maggie F

I thought I was going to lose my mind today. I have one of the sweetest women in the world for my aunt, my ADF's 92 year old sister. BUT, in the middle of talking about family who don't visit their grandfather, she started talking like he is alright at times. He is in an ALZ unit in a NH home now, for a few weeks. He is talking amazingly well, relatively speaking. Talks so much more than when at his home where he was talking less and less. It's the effects of constant stimulation of so many people around him. I know that. And it's great. But she sees him be so different and almost thinks he doesn't have Alz., even though she was saying he needed a NH, which is very hard for a person her age to say. Will someone please loan me a cross-section of an autopsied Alz. brain so I can show her what is going on with his brain? I don't even know if that would help!
She said he could sign things if he signs his name sometimes. She didn't get it at all that he doesn't know anything he reads, even when he can sometimes figure out how to say the words. So if there was a day when he could sign his name, he would have no idea what he was signing. He's in an Alz. unit, for pete's sake! An MMSE of 12! I'm beginnning to think she is still resistant to the diagnosis of Alz. because somewhere deep down she thinks, like my ADF does, that Alz. means crazy and she cannot bear to think her brother is crazy. How many times does a person have to hear it's a brain-destroying disease... not crazy.
I love this woman, I really do. And she has not abandoned her brother like his own son and most of his grandchildren. If I have to get a guardianship of my ADF to protect him from my sibling, she might be a person who would say in court her brother was just fine on (name the day). With her saying what she truly believed, my only hope would be if the judge had been even a part-time caregiver for a relative with Alz. I doubt if the neurologist would come a long way to give his opinion.
I'm sorry there is no funny twist to this grumble. I am thoroughly happy with the NH so far, and that is a huge blessing. and I am so grateful that this site is here to talk on and know that even if one other person reads this I have been heard. I am so grateful to eveyone who reads these, agreeing or not.
It is very late. I think I may sleep better now.
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: cbpatt

I wound up the caregiver of a 56 yr old woman in the 6th stage of alz. I have looked for a support group locally for caregivers but have no luck so far. I did not know what I was getting into and I find myself more frustrated with the family than with my charge. She, so I'm told, was always difficult in some ways, but I don't know what is alz and what is her personality. The family members are in denial and I spend as much energy dealing with them as with her. She is diabetic and the husband, who admittedly does not know what a carb is, gives her anything she wants. She smokes, even though she can not light them by herself and does not remember when she has smoked. I spend a lot of time doing stupid things per family members. I feel like I have her mother, his mother, the husband, and another guy friend of the husband who helps out, and the patient fussing at me all the time about some dumb something. When I say we need locks or alarms on the doors because alz patients tend to wander the mother-in-law insists I should sit with her on the couch all of the time. I have her 13 to 16 hrs a day and take care of the house, prepare meals, ect. and ect. It is ridiculous. She has hit me on 2 different occasions. I can deal with her with compassion, but when I have the family also I find it harder to "go the extra Mile" which is in my nature to do. I am unpaid. I backed into this situation thinking it was a temporary solution. I had been told I would be paid when she got her disability. When the disability finally came through the husband announced he was going to pay the mortgage! Yesterday I was sick, she was sick, the husband was sick. He came home a little early from work, I had her almost 12 hrs at that point. No matter what time he comes home she insists that he feed her. She can have just finished a plate of food I've given her and she will "pitch a fit" until he feeds her again. Great for a diabetic! Last night he called on the way home and told me-did not ask, but told me to fix her something before he came in. Why? I've tried and tried to get him to stop feeding her twice and he won't, then when it suits him he insists I feed her. But last night he wanted to come in and go straight to bed. Mind you, she'd had supper and a snack by now, 8:30. I gave her something and sure enough a couple of hours later he was again in the kitchen feeding her. The whole family is bent on making it up to her because she has alz and making her last days memorable even if it means being late on bills and not keeping their commitments to me. Crazy!
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: Jim Broede

It always seems to end in peace, Cherie. Even the agonizing struggles end in peace. --Jim
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: Jim Broede

If you ever get to the sunny island, Bernski, live the day fully. Don't get ahead of yourself by thinking about tomorrow. Be absorbed in the grand and glorious moment. Meanwhile, take advantage of the next sunny day in Chester County, Pennsylvania. I bet it's a nice place. Might even find a little bit of Paradise there. I look for paradise wherever I go. And more often than not, I find it. Can you tell? I'm a lucky guy. I have a feeling that you can be lucky, too. --Jim
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: Jim Broede

I'm on a diet. And exercise program. Because I put on 8 pounds while spending the winter in Italy. I've been back for only 2 days. But I've already lost 4 pounds. My tummy is grumbling over all this. But I'm just gonna let it grumble, grumble, grumble. In the long run, grumbling makes me happy. Grumble. Grumble. Grumble. --Grumbling Jim
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: Jim Broede

In a sense, Cherie, it makes me feel bad that I have nothing legitimate to grumble about. If I tried, I'd have to fake it. It'd be nice if I were more like you and other people. With legitimate grumbles. Maybe I could borrow some of yours. That would relieve you, wouldn't it? I'd be doing you a favor. And you'd be doing me a favor. Sounds like a win situation for both us us, doesn't it? And if you don't grant my request, I'll grumble about it. Quite legitimately. I can't lose. No matter what. --Jim
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: Maggie F

If I get to 92 and have clarity of thought and very good judgement, then I will consider myself to be very blessed. Even if I am slow physically and need help with daily living, I would still be able to enjoy my family and friends and be of use to them by being a loving companion.
To me, stage 6 Alz. isn't a blessing if a person's mind won't let them find enjoyment when the conditions are present but rather perceives a happy occasion as fearful.

No matter what might happen in the future... a blessed Memorial Day to everyone because many people thought enough of humanity to give their all to help us be safer.
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: Jim Broede

It's so very nice to see that my two favorite grumblers -- Maggie and Cherie -- are hitting it off. Connecting. Helping each other. That's the way it's supposed to work. Nice going, gals. --Jim
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: arizona sharron

Jim I dont know if you are the right person I use to go into the chat room a few years ago and met Mary McKinlay she was in Canada..and a few other people where you one of them? Do you know where Mary is
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: Maggie F

Jim, I must disagree with you on this one, at least in part. The staff and I do accept that the violence is part of this Alz. disease, but he is angry all the time and to relieve the anger and violence at the same time is a positive outcome for not only the people getting hit, head-butted, punched, kicked and bitten, but also for him who seems to be stressed ALL the time. It cannot be good for his blood pressure, or heart. Accepting that he has this illness occured for me years ago. To ease his pain, if possible, is part of my duty to help him have the highest quality of life that is possible. He cannot examine his feelings and lift himself out of the negative ones with whatever manner of coping he used when he was well. He is imprisoned by this illness, and if caregivers, family & professional, can help relieve the negative moods and provide opportunities for him to have more pleasant days, without neagtively impacting his health, then I feel it is our responsibility to do just that. It isn't not accepting who he is, it is refusing to let an illness take away any more than it has, if we can.
Thank you for your support, Jim.
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: zotzie

It seems I've found a safe place to grumble. And yet, it makes me feel guilty somewhat to do so. My grumble: I hate that this disease is destroying such a lovely mind. "I hate to watch it eat away, at meories that I wish could stay. Now who is that(?)and I live here(?)Are common now, I hate to say. And where is everyone, ya know. They try to help, but their lives are full. One sister does the best she can, and thankful for that fact I am. I hate that some don't understand. Would try to let her drink again. They simply just don't get it I guess. But I guard her well, I must confess. I feel like gestapo when she jumps, because I catch her lighting up. I simply do the best I can, am sure God has a special plan. But unknown to me, I get confused. Just how this isn't like abuse. On her poor body and on her mind. God knows I'm human, so please be kind. By not judging me as I grumble, for all my blessings leave me humble. I hate this illness heart and soul, to see her through it is my goal. I hate the dangers everywhere. A knife, some scissors, I just care. I know she still would love to cook. And hate to say no and get that look. I let her do what she can do. And tell her it's my pleasure to...be the cook now and laundry lady. Giving a giggle when I am able. I thank the lord for this site here. Where I can vent, be welcome, shed a tear." Thanks for sharing this. I've read it each day since finding this place to see posts. God bless and keep you.
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: Maggie F

Joining the early morning rambling musers tonight, or morning. Dark anyway.

My ADF gave me some evidence that he is really involved with the TV. At least he is late at night. I went to his room to say good night. He said he wasn't going to bed. He said he was waiting in that office for someone to tell him what to do, but the (colorful words here) wouldn't tell him anything, so he just left. He had been in the kitchen where the TV is and not in an office. Animal Planet and cooking shows for us now when he is watching.
He couldn't figure out the light in the garage. It was the light with the garage door opener.

As I heard some where, nothing is constant but change.
Anonymous
Posted: Saturday, January 7, 2012 7:03 AM
Originally posted by: skericheri

Jim---Our observations are all that we have to draw on. Yours may be different from or more limited than mine.

I've witnessed 2 types of final breaths. One battled death...The other appeared to welcome it In both cases I felt solace in the fact that both parties had finally been granted peace...and...Will do so again upon Charlie's passage.