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Old 06-30-2008, 10:35 AM   #1
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Oh, the frustration!

Ok, my new friends...straighten me out.

I went next door to feed daddy breakfast as always, and since this is Monday, it is housework day, so I had the vacuum and mop with me. I walk in the back door, and there he is, all the frozen food out of the freezer, announcing that he is "defrosting" the freezer. He has a metal spatula and a thin bladed knife, starting to hack away at the freezer walls. YIKES! I look over at the table, and there is a Marie Callendar's meat loaf dinner, all cooked all to hell from the microwave,(his default setting is 9999) and I asked him what that was for. The dog. He is cooking the $4 Marie Callendar's frozen meals for the dog! I put down the vacuum and the mop and bucket, took away the tools and told him I would finish the freezer (took me 10 minutes - no need to defrost at all), he sat down and started FEEDING THE FREAKING DOG FROM A FORK, and got MAD AT ME for taking over the defrosting. My 12 yr old wandered over, and dad was abrupt and weird with him, too. I sat down and took dad's blood pressure - 98/63, and decided to just try to figure out why this guy was making ZERO sense, was abrasive and weird.

I'd like to say that I figured it out. I didn't. I just made sure he ate well, let him feed the fat stupid dog the $4 frozen meal, finished the defrosting, vacuumed, dusted, cleaned bathrooms and mopped all the linoleum. Then...

His carpet in his duplex is new. They laid it right before daddy moved in. They did not stretch it properly, so it has a couple of "bubbles" in it - no big deal. Daddy is convinced that there is water under those bubbles. I told him that it was indeed an issue as it was improperly stretched, but there is no water under it or the carpet would feel wet. Do you think for one minute he buys that? No way. He argued and argued with me (at least I think that's what he was doing - he can't string a sentence together today), till I remembered Deb and Martha and ibake's advice: Never argue. Distract. So that's what I did, till I had him calmed down, and then I came home to write to y'all.

This is so unbelievably frustrating!!!!!!!!!!! I cannot convince him that the dog does not need the expensive frozen meals, there is no water under his carpet, he does not need to rearrange the furniture every day, he does not require laundry services (mine) for one pair of undershorts and a pair of sox, and that no one is coming in his house late at night.

I fear the time may be coming where his semi-independant living situation may be coming to an end. Either that, or I will need to go to assisted living myself.

Thanks for letting me vent. I hate it when I get so frustrated with a man that has zero idea of what he is doing, a man that I love so much, a man that deserves better than this.

...deb

 
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Old 06-30-2008, 11:12 AM   #2
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Re: Oh, the frustration!

I too think he will soon need to be in a facility where he is taken to the dining area for every meal and has no refrigerator of his own.

Meanwhile, you may want to keep all his food at your house. Just have enough in his to feed himself and the dog (dog food?) for one day at a time. Of course he may not accept that and feel he needs to go shopping.

He will not remember from one day (or hour) to the next how you explain the carpet bubbles. In fact he may be taking a knife to it, to open up the carpet and get the 'water' out right now ... until he forgets all about it.

I got to the point where I removed all sharp instruments from Mom's reach, because I was afraid of what she could do to herself or household objects while trying to 'fix' something. I also left the toaster unplugged and the coffee machine locked away. Too many occasions of burning or dry overheating of one or the other.

Mom actually needed 24/7 care, and I was working and out of the house for 9 hours a day.

It was a no win situation, and all the while I had calls from my sister telling me how I OUGHT to be doing everything (different, better) while she refused to come and even see Mom ...

Good luck .. remember, the nursing homes and group homes or assisted living places of today are not bad places ...

Love,

Martha

Last edited by Martha H; 06-30-2008 at 05:38 PM.

 
Old 06-30-2008, 01:32 PM   #3
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Re: Oh, the frustration!

deb....Your words ring so true. "He deserves better than this". That is what I finally got into my head and started on the road to AL for Mom. I tried to be everything to my Mom. I walked in on some bizarre happenings at her place. It was just too much for her to even "think" of what to do next.
I'm not saying its easy, believe me. But she is so much better off now than when I tried to be "super woman". The word frustrating doesn't begin to explain how I felt. Now Mom is safe and being looked after and I'm satisified that I did all I could do.
I feel for you deb, I truly do. You can keep on trying.......in the end we know it will not get better. Only worse. I know you love him. My Mom is everything to me. I didn't really have a Dad to depend on. Just Mom. She is my buddy.
Good luck. I'll be thinking of you.
Chris

 
Old 06-30-2008, 04:11 PM   #4
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Re: Oh, the frustration!

Martha and Chris are giving you good advice. I will send up a third to what they said. I also tried to keep Mom and Dad at home without 24/7 help and it was totally impossible. They could get into more the few hours they were left alone than you or I could think of in a month. There is no rhyme nor reason to what pops into their head.... but if it's there, there is no getting it out until they decide to let go of it. You can not be in two places at once so there are times your Dad will be alone. Next time he might do something more disasterous than feed the dog a frozen dinner or thaw out the freezer. I'm with Martha on getting rid of anything that might be a hazard, especially sharp objects. But then you never know. Dad picked up a rock out of the flower bed and smashed the glass in the side door because he couldn't figure out how to unlock it. There is no way to keep one step ahead of them because you can't think like they do.

It was not easy to move Mom and Dad to AL. It was probably the harder than the day mom was diagnosed. But i know in my heart that it is the right place for them and if I had to do it again, I would.

Think it over.....

Love, deb

 
Old 06-30-2008, 09:08 PM   #5
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Re: Oh, the frustration!

I fear you may all be right. I think that the move to AL may come sooner rather than later. I hate to think of it...just like you all did.

Here's a weird thought: I think daddy may be 90% demented and 10% manipulative. Yes, I said it. Manipulative. He does stuff that you would expect from a dementia patient. But then, when push comes to shove, like when I was on vacation, he was a MODEL guy! Kathy told me that he did absolutely NOTHING untoward, ate like a champ, was friendly and pleasant - in fact, she and my own daughter have said to me that they never see this behavior I speak of. Well, first of all, I am the one that spends hours and hours a day with him. No one else. My daughter pops in 3x a week for 30 minutes, and he is on his best behavior. Makes me feel like I am the one going batty. My 12 yr old sees more than most - he validated the morning we had with my daughter. But I think people are going to stop believing me, even though he cannot string words together sensibly or make a decision to save his sad life, or walk more than 10 feet at a time. Those things are obvious and unchanging. But for him to do stuff like ask me to shave him, or cut his nails, or clean his ears (all of which I do, by the way) and then be able to re-string cable from one room to another through a freaking closet? Is he actually capable of more than he lets on? Then why is he able to recite perfectly his name and social security number, date of birth and every member of his high school football team, but has not a CLUE as to what his address is? Or who his children are? Or if he even HAS children? Phone number? No idea. President? No way.

His doctor is of no help. 15 minutes, every 2 months. Quick check, and see ya' in 2 months.

I tell ya', I am ready to grab that hand towel and ....oh, I just don't know. Maybe I just need to go to bed. Oh, but wait! I can't! We have company arriving in 36 hours from out of state and I have a lot left to do. But then...I am just going to let this day go away and wait for a new one.

Sometimes, it's just all too much. And this is exactly why the move to AL is so hard for me to pull the trigger on. Is he a danger to himself? Really? Or is he just manipulative? Wow. The puzzle just gets bigger, doesn't it?

Thanks for the shoulder to vent on, y'all. I don't know what I'd do without you.

...deb

Last edited by skimps46; 06-30-2008 at 09:12 PM.

 
Old 07-01-2008, 05:20 AM   #6
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Re: Oh, the frustration!

It is some of all of it Deb. They lose their ability to process and their current memory but not their intellegence. The losses are a progressions with current going first but no particular rhymn nor reason to what goes and what stays. I know my Mom can be manipulative but I also know that her thought processes are so scewed that it is not like you or me being manipulative. She sees things differently and reacts differently and it comes across as something is may or may not be. You have to remember, they are not of our world but exist on Planet ALZ where everything is bent and warped from our normality. So he may be manipulative but it's ALZ manipulative. I truly believe they would do better IF THEY COULD.

As far as being a danger to himself, that is a great possibility. I can't say that something will happen but the chances are great. Mom got angry with Dad, stormed out the door, walked down the block, and tripped over a vine trying to clean up an area that she had been ask releatedly not to go into. She swore that was NOT what she was doing but the break, scrapes, broken tooth etc all screamed that she had something in her hands and did not catch her fall. Before dementia she would have called the city, in her dementia she knew nothing else to do but to go into the bramble and try to do it herself. Something as simple as turning on the stove to heat up a room, then forgetting it and leaving it on all day can cause a fire. Dishtowels left on a stove top and the burner turned on. Sticking a screw driver into something electrical. The list goes on. Mom and Dad almost burned the house down plugging the vacumn cleaner into the battery back up for the computer. The current flow melted much of the electronics and there is a burn on the carpet and wall to this day. Mom just mentioned that something "smelled funny" and she had to go fix the breaker. They never unplugged the bettery back up. So yes, there are definitely a danger to themselves because they do not understand how to do what they think they need to do. Beyond that there is the wondering and getting lost.... and you never know when that will start. If they can walk at all, they can wonder off. It would surprise you, perhaps not from what you just wrote, what they can do if they get a thought in their head.

So at least give AL a good consideration, much thought, and go check out some facilities. It will take you longer to get ready than your Dad.

Love, deb

 
Old 07-01-2008, 06:19 AM   #7
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Re: Oh, the frustration!

deb, My entire family has wondered how Mom can remember some things perfectly....then have no clue how to dress herself. There is no rhyme or reason to any of her behavior. There is no answer. Its Alzheimers. We just don't know how her poor mind works. Sometimes the "switch is on" then its
"Off".

I had a discussion with one of her Doctors. She doesn't see him often. Only when her regular Dr. is out. He said "Mom can answer my questions perfectly". Drives me crazy. YES, she can at times. I told him when we left that day she wanted to know where she lived and had to memory of where we had just been. He is a Dr. for Gods sake. Doesn't he know the answer???
I sometimes wondered if Mom was doing some of these things on purpose, just to me. She is not. She can be herself with me. Thats the difference. She "holds on" when she is with strangers. She can seem "just fine". Thats what I hear from people she sees for 5 minutes. Shes NOT "just fine".
deb is so right about AL taking time. It took us about 5 months to get Mom into her apartment. It was 5 very very long months for me.
I wish you all the best. Take care of yourself.
Love Chris

 
Old 07-01-2008, 07:09 AM   #8
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Re: Oh, the frustration!

Oh WOW!.....Bringin' back memories!

Deb...so glad you've found your way here. Advice from those of us who've been much too long on this journey with our loved ones will be SO helpful...and the shoulders offered will help keep your sanity!

I remember my own Mom (in her 10th yr. at an Alz. fac.) practicing like mad at each Dr. visit....6 kids in birth order...counting backwards...date...etc. She was very aware of what was happening to her, and tried so hard to convince everyone differently. Little daily things that seem so insignifanct seemed to be the most challenging to her.

I used to keep all the bottons bottoned on her blouses when laundered because she could not remember how to do them...made huge lettered signs with pictures to tape on dresser drawers to help her find things...ALWAYS took a typed list of questions and observations to Dr. visits and slipped it to the nurses when I signed her in...(having a sibling there who validated was also helpful!)...and finally ACCEPTED the fact that we would NEVER go back to how it once was! As Mom had to make strange adjustments...WE did too.


I don't know why it so hard for each of us to simply admit to ourselves that our loved one would be safer and "more understood" in a facility!! As hard as it was to place my Mom...(and those first months of guilt and regret we all had...ARGH!)...we absolutely KNOW it was the right decision for her.......and US!

Both inlaws also affected by Alzheimers...way too much time went by before their 3 sons realized (admitted!) they should not be living on their own. I feel so bad about not pushing for their placement sooner. Their daily life would have been so much easier for them to tolerate. Keep posting away.......most of us have been where you're at............Pam

 
Old 07-02-2008, 07:25 AM   #9
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Re: Oh, the frustration!

Deb, deep breath....now sit and listen to me tell you what you said. You said he deserves better. What you meant was that your father deserved better in the sense that he deserved to be better because of the life that he had lived and the person that he was and that he was your and is your daddy. BUT what your brain is telling you is that your daddy deserves better.. better in the sense that right now, right here he deserves to live where he does not have to have worries about living conditions, meals, wandering, dangers, stress for his darling daughter, worry for her, the fear of being alone.

Deb, you share such a tight living bond with your dad that you can feel his needs even if he cannot voice them. It is a gift and a curse. It has enabled you to keep daddy close to you for as long as you have had him. But, my dear, it is drawing close to the time where daddy needs to be cared by others for your sake as well as your family. Your heart has stepped back to let your mind take the lead here. It is time for Daddy to be cared for by trained professionals 24/7. It's a miserable decision to make, but you know in your heart of hearts, what your brain is already telling you...the time has come. It is time for your Daddy to be more secure and safer..You have done what you can do...

 
Old 07-02-2008, 08:02 AM   #10
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Re: Oh, the frustration!

Well said, Ibake. You are right.

frustration = trying and trying but not succeeding.

This is also the quick definiton of Alzheimer caregiving.

In a faciity with trained personnel, they do not experience frustration because they do not expect your loved one to behave rationally. Not being expected to do anything 'right' is a great unburdening for the patient as well as for you.

Good luck.

Love,

Martha

 
Old 07-02-2008, 08:47 AM   #11
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Re: Oh, the frustration!

My daughter gave me a great definition of "insanity" -

Attempting, over and over and over, to accomplish something, failing, and yet trying again while expecting a different result.

Yep. Welcome to the land of Alzheimers and dementia.

I think there is no question that you are all right on the money on this one. It's time for daddy to get more intensive care. That's what my head says. My heart is in total denial, saying that he is ok to still have his own house, be surrounded by his own stuff like he likes, go on outings with me all the time (the grocery store yesterday was misery for him - he had the hardest time navigating - but he sure enjoyed the McDonald's shake and burger I bought him), and that it's not time yet.

Deb, I think it was you that told me a long time ago that it's not when they are ready. It's when WE are ready. That makes it clear. I am ready. I am NOT ready. I AM ready. I am NOT ready. Did any of you end up just making the decision and sticking with it without the internal torture I am going through?

I've said it before, and I'll say it again: I think I am the one going batty here. For someone like me to have to make this decision is ludicrious. How can I decide this for someone? I must. I know that. But what if it's truly too soon? What if I wait too long and he gets hurt?

All I can do is pray and hope that for today, all will be well. It's all I can do - for today. He has a doctor's appt next week. I will certainly talk with her about this. Maybe get that evaluation she promised 2 months ago.

Thanks for being straight up with me, you guys. It's what I need. And if you could share with me your stories of how it came to be that you moved your loved ones to AL...that could help, too.

...deb

 
Old 07-02-2008, 09:26 AM   #12
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Re: Oh, the frustration!

deb...

We moved mom when she had a partial hip replacement and needed rehab therapy. When she was almost done with the therapy her doctor told us(mostly daddy), you know that you can't care for her alone any more Milton....and so the decision was made, almost without effort on our part in this case. We definitly had guardian angels guiding us in this venture. The insurance made an exception to their rule to keep Mom there, the doctors approved her move, PT accepted her....we were blessed.

Deb, stop your dithering...you are making yourself ill and us dizzy. Take a deep breath accept the fact that this needs to be done and do it. You will feel so much better once you do. AND you really aren't being fair to your father you know. He deserves better. Round the clock alert compassionate care with trained alert 24/7 care. think on it deb.....

 
Old 07-02-2008, 10:40 AM   #13
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Re: Oh, the frustration!

What you want to do Deb is to not let the decision be made for you. We waited until we had no choice and I can tell you today that I wish we had taken the step sooner. It was obvious that Mom and Dad could not maintain in the situation they were in but just like you, mainly because of sister influences, feet were drug and drug and drug. There was so much conversation and flip flopping and turmoil. After Mom had a massive melt down, mostly brought on by the situation we left her in, became violent with the sitter, and gave us no choice, did we finally get off our delusional butts and do something. I wish I didn't have those memories of that last week. It was not the move but the frantic phone calls, the uncertainty of what was going to happen and if we could get it done fast enough. We were extremely lucky (with a multitude of guardian angels watching over us) that nobody was hurt and that we were able to find placement and accomplish all that needed to be done in a week. Don't put yourself where I ended up.

That quote came from Albert Einstein and he was one smart dude! That is exactly what you are doing. Walking through one crisis after another wishing that the next time it will be different.... and it's not. It will only get worse and eventually you will find yourself in a situation where you have NO choices. Don't wait for the broken hip or the massive melt down or the disappearing act or the fire or....... Do it and know in your heart that you have done what is right!

A year ago I was where you were and I don't want you where I was nine months ago I will keep you in my prayers....

Love, deb

PS.... you can surround him with his stuff in his new place and you can still take him for burgers and shakes.... or bring them to him. You can see him as much as you need to and still do for him. He will just have a massive staff to watch over him when you are not there instead of being in a place by himself.

Last edited by Gabriel; 07-02-2008 at 10:42 AM.

 
Old 07-02-2008, 02:15 PM   #14
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Re: Oh, the frustration!

Here's my story, I'll try to consilidate as much as possible...

For the past couple years, I'd notice, along with other family members how difficult ordinary tasks were becoming for mom. She would need notes telling her on how to turn on a light switch; TV; etc.

A few times she would forget to hang up the phone. I'd end up calling the phone company to see if the phone was off the hook...YES, it was. Of course, I have no idea if she's on the floor while trying to call for help or what. I arrive at the house..sometimes it was even 11 at night, and ring the bell..mom would look out the window first to see who it was (which was good that she still knew to do that before opening the door) and she'd let me in as I'm saying her phone must be off the hook and I wanted to make sure she's okay. She was rather embarrassed and blamed the phone for not working right.

Then there were issues with the microwave...had to buy her a new one and it just completely threw her...no idea how to even make a cup of hot water for some tea.

The straw that broke the camels back was when I had my mom test her life alert bracelet to make sure she is still connected to the company. She had no idea how or where to press the button on the bracelet. I thought, that's it..she is in too much danger for her to be left alone.

I just told her one day that we'd been invited to an AL facility and why don't we stop there and just check it out. Well, the administrator was all I could hope for, in fact, the whole place was like a hotel. Mom was greeted so warmly and before we knew it, she was signed up to move in the following week. There were some emotional moments but mom says she puts her trust in me to know what's best for her.

Things were going well there until she began getting lost in the facility; not being able to find her way back to her room; and then using her walker as a toilet. One morning I received a call that the rescue squad was coming to take her to the hospital as she was found unresponsive.

Turned out she had pneumonia, (although there wasn't any outward sign of coughing or hacking that I recall). She did regain consciousness but was very groggy. Stayed in the hospital for about 5 days then was ordered to a rehab facility which is part of a NH. She just never was the same after that. So when Medicare stopped paying for rehab, I was faced with the choice of keeping her at the NH or sending her back to AL. I knew she couldn't cope at AL any longer, and the administrator of the ALF said he would take her back and try to make it work if at all possible, even knowing that she had issues that were more of need of skilled nursing.

I told him I wish more than anything she could go back to his place, but I didn't want to move her again and risk another setback and worst of all, lose the room she had at the NH. As it was, I'd befriended the social worker and know the Dir. of Nursing all my life, and they pushed her application ahead as a favor to me to get her in there.

So, in less than a year, my mom declined rather quickly..but at least she is safe now. From what I've read about your dad, I think it's best to get him into a facility now before you wish you would have. I know how hard it is, believe me..but it would be harder on you if he harms himself. My mom even had trouble with the stove burners once and claimed the stove was too hot, there was something wrong with it and she couldn't shut it off! How naive I was and believe her...it was a 38 year old stove afterall. I go out and buy her a new one before it dawns on me that there wasn't anything wrong with the stove. What was I thinking?!! Talk about denial! And this was when she still could use the microwave and turn off the lights! Turns out she never would use the new one because she was afraid of it. I thank God she didn't burn herself that day with the old one. But I sure felt stupid after I realized what really happened.

So, best of luck and thanks for reading my saga.

 
Old 07-02-2008, 03:00 PM   #15
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Re: Oh, the frustration!

Deb...each one of us have challenging and frustrating stories of how we came to "the decision". Believe me, we DO know how you're feeling right now! To those who are able to take care of their loved one at home...bless them...bless them!! I honestly don't know how they are able to do this and still function in a somewhat normal fashion. I also have friends who are attempting to do this on their own...and their lives are no longer their own.

My Mom broke her hip from getting hit by a car...we honestly thought she'd be returning to her big old farm house. This disease became more and more obvious...so she never went home. She's in a wonderful Alzheimer's facility in Toledo, an hour away from me....and out of 6 kids, I'm her only visitor. (3 brothers live right there!)

Guilt?!? You bet! Mom being EXTREMELY mad?!? Oh my gosh....how did we ever get thru that? I would cry all the way home every week. Her actions and behaviors were so difficult. After a few very difficult months, Mom settled in and started to think that was always here home.

Our stories are all different...yet very similiar. We absolutely HATED to do what had to be done. Looking back (10 years now) I see how my life has revolved around this horrific disease (both inlaws too!)...but know in my heart my Mother is exactly where she needs to be.

Your daughter's interpretation of "insanity" is excellent! Thanks for sharing!........Pam

 
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