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Old 09-19-2011, 02:37 PM   #1
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Angry I ***HATE*** This Disease!!!

I do......I've HAD it......I *Hate* what it's doing to my stepdad......I *Hate* what it's doing to me......I *Hate* what it's doing to my mom........today I'm just ****** OFF! I'm tired.......of always trying to have a stiff upper lip......tired of feeling soooo depressed over losing my stepad so painfully slowly to this horrid disease........realizing what damage I've done to my own life by being the main "go-to" person in the family for my stepdad (and my mom).

When I'm around him it kills me.......when I'm away from him if I am thinking about it it also kills me.........today he had a dental appointment. He's on a two month callback schedule as he refuses to let the caregivers help him brush his teeth (he has an upper denture but has his lower teeth still). I mean, don't get me wrong. I'm glad that I'm there for he and my mom, it's just.......I'm seeing that it's wearing me out / down as the years are beginning to go by

It's days like today that I wish I didn't own a home - was just renting - could just give 30 days notice - and - move. Would it do any good?? Probably not.....but it SOUNDS like a good idea. Just to get a new scene around me.....just to......feel like my life is moving forward (I know - I know - it would just be a bunch of stress to move, and what's that saying? "Wherever you go - - there you are").

I try to console myself by reminding myself how many millions of families are dealing with the same issues I am.........well...........today that is NOT helping!!!! I HATE this disease!!!!!!!!! WAAAAAAAAAA!!!!!!!!!! So - yes - we got him out - got his teeth cleaned - took him out for a meal (as I've mentioned in previous posts our outings are getting more infrequent because he's getting more difficult to transfer). He spilled his food all down the front of his clothes, which I now expect. It doesn't bother me, but it's just......upsetting!!! To look at this man - who has been SO strong - SO capable - and now - he can hardly feed himself anymore.

And it all takes so much time. 5 hours from beginning to end - from the time I left my house to the time I got back. I'm telling myself to do something productive this afternoon, yet all I'm feeling is great FRUSTRATION.......GRRRRRRR.........I know what it is: here is the "ah-ha": No matter how much I DO or DON'T **DO** for him.........it's not going to stop the progression of his disease. He is only going to continue to deteriorate.......I think because of this I now feel like all my effort is for not. Does that make sense??? Whereas before at least I felt like I was making a difference for him - in the quality of care he was getting - in making sure he was / is well cared for. I know - I'm just rambling-babbling frustration right now. If I didn't have a paralyzed vocal cord - I would just SCREEEEEEAMMMM!!!!!!!

 
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Old 09-19-2011, 02:55 PM   #2
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Re: I ***HATE*** This Disease!!!

I am so sorry that you feel so bad...

The only way that makes sense to me about such decline is that we can only offer comfort care. You are right, there is no cure. The news I told my step BIL is about the decline of his Dad all the time. Oops, this happened and that happened - try to call him at certain time... It is going downhill all the time. How long is it going to take? I cannot take it anymore either. It has been SO LONG... Oh MY GOSH... So I am going to the opera with my hubby Thursday. We have not seen an opera in real stage for years and I love it...

I know it is so FRUSTRATING.... Please try to find some space so you can go do something else to get away from this for a while....

I know how you feel. I see that my FIL went downhill from a sound professor to become such a retarded old man!!

Please try to give him pureed food. My FIL now has pureed food due to his swallowing issue but it makes him much cleaner! He still eats regular soft desserts.

You are not alone.

Hugs,
Nina

Last edited by ninamarc; 09-19-2011 at 02:58 PM.

 
Old 09-19-2011, 03:21 PM   #3
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Re: I ***HATE*** This Disease!!!

TC... shut your eyes, clear your mind, and just breath for a few minutes. Calm and center yourself. It's been a long frustrating day and that ocean of despair is washing you away. So the first thing you have to do is ground yourself. As I read you post, you know what to expect. Your mind has it but your heart just doesn't want to follow along You are fighting the inevitable. You are fighting windmills.

You are right, this is a hopeless disease. No matter what we do, we are not going to alter the ultimate outcome. It progresses frustratingly slow. It not only takes over our loved ones life but ours as well. It takes something simple that could be enjoyable and throws a huge blanket of doom over it. But that is when you have to change what you think to change how you cope.

Yep, I have been where you are today. I wanted to hit something, throw the rest, and rail at whoever and whatever would pay attention. But what good does that do? It only upsets ME!!

You wanted to do something productive? Geeze louise TC... you have done something productive. You have taken your father to the dentist and out to eat. That in itself is enough! You did it and you succeeded. Your Dad spilled some food, so what? Did he have a smile while he was doing it? Did he enjoy his meal? His teeth are clean So what has you so upset? I know... it is because it is what it is and you can't do a flipping thing about it!!

Rather than looking at the long range outcome or even the short term effects you have to stay in the moment. You watch Dad spill his food, you see the man you truly want to be there, and you know what is going to happen in the future and you freak. Yep, I get it. Instead of going there try to stay with the moment. Keep the conversation light. Find a reason to smile and make your Dad laugh. Grab his fresh clean smile and hold on to that. Why are you doing all this? It is for the moment!! It is to accomplish a task like getting his teeth clean. It is to enjoy a meal out with your Dad. It is to know that you have given him care and joy in the moment. We can't stop the disease but we can give Dad those moments of joy... and we have to give those to ourselves as well.

One train of thought will tell you that what you are doing is for nothing. No you can not change the course of the disease. But the train of thought you have to hold on to is that you have given something important to your Dad today. You have made his life a little better in the moment and that is all we can ask for. Now you have to pat yourself on the back for a job well done.

Find the book I have mentioned several times before.... "Coping with Alzheimer's :A Caregiver's Emotional Survival Guild" by Rose Oliver and Frances A Bock. Put your feet up with your favorite beverage and start reading. It will give you explanation as to why you feel the way you do and what to do about it. I have read it twice so far and my book is falling apart!! I keep going back and reinforcing what I need in the day. It is this book that let me laugh with Mom as I dealt with her bowl impaction! It's a mental game we have to play with ourselves to save our mental health!

Hang in there. Balance today with something just for you and take some time for yourself to heal and grow stronger... and to read this book!

Love, deb

 
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Old 09-19-2011, 04:23 PM   #4
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Re: I ***HATE*** This Disease!!!

"because it is what it is and you can't do a flipping thing about it!!"

Exactly Deb!!! Thanks for the kind (and sage) words Deb & Nina. I know you both understand - have felt what I'm feeling today - and I can't thank you enough for being there!!!

As for the food spilling, part of what makes it tough is he's aware it's happening and it upsets him too So - I'm always wanting / trying to find a way to joke about it (I usually can get a laugh or a chuckle out of him), yet not completely hurt what sense of dignity he still has. When we got him back to the adult family home, they toileted him and completely changed his clothes. That'll tell you how bad the spillage was

Well gosh darnit anyway - it IS what it IS and there ISN'T a flipping thing I can do about it!!! Love that! Thanks Deb for pointing out that I did do something productive today. I've been really hard on myself lately about things, and......well....that never helps.

Thanks all. Am working on an attitude adjustment.......

 
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Old 09-19-2011, 04:47 PM   #5
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Re: I ***HATE*** This Disease!!!

I don't know why but we are always harder on ourselves than we are on anybody else. We understand when somebody else is in an uncontrollable situation and we have sympathy and empathy for them. But when we find ourselves in those same situations we beat ourselves up because we are not super woman who can fix the unfixable.

I have a pretty linen towel that I tied ribbons on one end. I just cover Mom's clothes up with the snazzy towel (it is pretty) while she eats and then rolls it up. I have even been known to slip the loose end under the plate. That way it catches everything. We walk out with mom as spotless as when we walked in. One of the guys in Mom's facility has something similar but it is a shirt front. His wife just cut a apart at the shoulders and then down the front just in front of the sleeves, hemming the edges. Those are possibilities for the next trip. The other thing you can do is make sure he gets food that he can handle with his hands but that doesn't drip. Dad loved chicken tenders

One thing you need to remember about being in the moment... you are the one beating up on yourself tonight and your Dad just knows something good happened today. He doesn't remember the spills. Take a page from Dad's current thought process and leave whatever it is in the past where it belongs. Just remember that you did good things for your Dad today and you deserve a pat on the back. If you won't give it to yourself... I will!!!!!!

Love, deb

 
Old 09-20-2011, 03:32 AM   #6
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Re: I ***HATE*** This Disease!!!

I'm so sorry that you are suffering so badly. It brings back memories. In my opinion it is the hardest sickeness to care for, bar none. Well, the person with AD is at least not in pain, but otherwise --the pain for the loved ones is intense.

Is there any way you could get a dental hygienist to go to the NH and clean his teeth there? Why has the NH given up on helping him brush the? He 'wont let them' in August doesn't mean he won't let them in September. You might also consider leaving out the lunch. The time came when my Mom was not fit to eat out any more, the hassle was overwhelming the enjoyment, so we stopped taking her out. My brother often brought special food into the NH.

Meanwhile, do something special just for yourself. Give yourself a treat, whatever works for you. You are doing a real service to humanity by being a caregiver for an Alzheimer person, and you deserve recognition for it! Just as all the others on this site give up time, nerves, peace to be there for their loved one. Accolades to you all, and God bless you!

Love,

Martha

Last edited by Martha H; 09-20-2011 at 03:32 AM.

 
Old 09-20-2011, 05:59 AM   #7
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Re: I ***HATE*** This Disease!!!

Good morning TC----if I lived closer to you I would come and you could use me as a punching bag,scream (if you can) at me and give me a couple of good shakes.Luckily I live far away! I hope you know that you are doing more than enough--you are at this place at this time because it is the right time and place.This is part of your journey and you are travelling it the best you can.We are all going up the same mountain,sometimes we slip or we don`t seem to have any strenght left to carry on.But then we meet other travellers on their way up and we carry on with them.Often we hold each other`s hands so we can climb together.Then a storm comes and we have to shelter together to wait until the storm is finished----and then we carry on.I am glad I am not climbing alone but there are others like you,it makes the journey worthwhile.Keep climbing TC.

 
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Old 09-20-2011, 09:22 AM   #8
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Re: I ***HATE*** This Disease!!!

Thanks Martha & Avio. As fas as his teeth cleanings, I can still get him to the dentist's office. He is in an adult family home, not a nursing home, so I know they have a doctor that gives care there, but I'm sure they don't have dental care that comes there.

His caregivers are really wonderful, and I know they try their very best. I can ask again about the teeth brushing, but I'm sure he's just.....not cooperating! I can't blame the guy, really. My stepdad I mean. He probably feels like they do everything else for him - he can still brush his own teeth!!

But yes - the eating out will be a thing of the past before too long. I wasn't planning on taking him out to eat because now, he's usually too tired after an appointment. But he was having a good day - the sun was out - and my mom and I thought we'd give it a shot.

I can tell I'm tired today from yesterday. Don't feel much like doing anything.....and Avio, you are sweet! If you lived close by, I probably would just sit and vent with you for awhile and not use you as a punching bag! Fortunately, I can vent on here and know that I am not alone on this journey.....

 
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Old 09-20-2011, 02:17 PM   #9
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Re: I ***HATE*** This Disease!!!

i hate this disease, also. its wonderful to vent. take deep breaths and try to take one day at a time. its so frustrating........

 
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Old 09-22-2011, 04:22 PM   #10
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Re: I ***HATE*** This Disease!!!

Sheesh!! I am gone for a while because of computer issues and you go and have a meltdown without me. No fair!

Remember when we used to pass out the comfort towels here? ... you needed a whole darn laundry load that day! Get a stack ready for the next blow up. You can jump in them and scream..silently. Cover your head in them and breathe deeply til you find yourself running out of oxygen. Then eat some chocolate!

Yes, I joke...but there has been some time since that day you felt so bad. We do have to laugh. We can't forget that. For every ounce of angst we feel because of this disease, we have to balance it with joy or we will be thrown so off balance that we will surely fall off the face of the earth! There were days I was sure I was clinging by my splintered and broken nails!

It is heartbreaking. It is maddening. It is awful! No getting around it. The people we love are diminished day by day by day. Right before our eyes.

Mom had stopped letting them brush her teeth so I tried and she let me. I would sing the old Ipana toothpaste commercial jingle. "brusha brusha brusha with the new Ipana". I would make it a game. She was fine with it. I found it interesting that she still knew how to rinse and spit. As maddening as it can all be I still found things that were fascinating. Those times I brushed her teeth were moments I was able to bond with her..whether she knew it or not. She knew I was there and I knew that gave her comfort. That is why we do it. That is what matters. We can't cure it but we can sure as heck make it better for them for just a moment from time to time.

Dh and I were out to dinner last week and we went to a place and sat in the same booth where I had taken mom once...she had a glass of tea and spilled the whole thing all over herself. She was so upset...and sopping wet. I was upset but cleaned her up with my frozen smile on my face...never letting her know my own frustration. So I do understand the restaurant issues. We want them so badly to be the people they "were", that it just plain hurts to see them not be that person.

I do remember the MANY days I felt like you...I would come here and carry on and would get the "one day at a time" speech....which I needed to hear. I would come here and just about beg anyone to puh-lease tell me how much longer. That was the hardest..not knowing how much longer...not knowing if I could keep doing it. I think if someone had given me an end date it would have been easier.. (maybe) .

At some point I just told myself that it is what it is and from that point on I seemed to handle it better. It would last as long as it was going to last.
I would get up and go to mom and delight in her smiles and kisses and then come home and find some way to medicate myself...not with medicine but with joy of some sort. Candy, TV, a swim, shopping....something...just something.

Love, Meg

 
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Old 09-22-2011, 05:43 PM   #11
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Re: I ***HATE*** This Disease!!!

Hey Meg! So glad you're back on the board Yes - you missed all the fun! Not! Thanks for every word you wrote. They all help - and they're all true. You sound good. I hope that you are.

I relate to restaurants and memories. Last night my bf and I ate at what used to be my stepdad's favorite restaurant. I couldn't help but think of him throughout dinner, but was proud of myself that I didn't bring it up to my bf (since.....well.....I sort of chose the restaurant and all.....not sure I'll do that again because of the amount of memories).

Yes, this coming Monday my stepdad has an eye appointment, so another outing for me. Not sure if I'll include lunch with this one or not.....will just have to see how he's feeling (and how I'm feeling). I had coffee with a dear friend of 25 plus years yesterday. We both have (and are) suffered from depression. He was reiterating that I have to be careful about doing things for others that I really don't want to do (he's known me a long time). I told him I agreed - but that can be very difficult - and/or impossible when you have a loved one with dementia.

Yes - I admit - I do wonder about timelines......but......it doesn't do me any good. I certainly am not running this show Oh - and thanks for the towel reminder! I've always liked that! I think I need a big 'ol stack in reserves

 
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Old 09-22-2011, 05:54 PM   #12
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Re: I ***HATE*** This Disease!!!

Trowing a truck load of many colored towels in TC's direction It's about balance. So do something that you love the day before. If an appointment and lunch is too much then just do the appointment. Save lunch for another day. Then have something behind the day that gives you joy and something to look forward to. Your mind will follow your thoughts and if you fill it with good things it will be more positive....

Love, deb

PS>.. it is so good to have Meg back This place needs some Megisms!

 
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Old 09-22-2011, 07:46 PM   #13
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Re: I ***HATE*** This Disease!!!

What has surprised me is that I have not avoided any one place..i thought it would be difficult to drive by mom's place but instead I am going up there. It hurt a little to be in that restaurant again but I have been back there a few more times since.

I have a cousin whose dad died a dozen years ago and to this day she avoids driving by the grocery store where he once shopped. I don't want to turn into that!

Love, Meg

 
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Old 09-22-2011, 10:24 PM   #14
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Re: I ***HATE*** This Disease!!!

I am much like you Meg. I wondered about going back to the facility but Mom was there and I had no choice. There is one guy that looks a lot like Dad and loves to sit on the porch where Dad loved so. Sometimes when I just glance that way and see him.. I have to shake my head. The first trip back to the cabin was a little touch because I know how much Dad loved that place but since then it has just been a close connection. What really surprised me was going back to our family home. I moved in there at age 3. Yet there are no overwhelming emotions there at all. They are all at the cabin. I am not sure I have slowed down enough to even grasp it all yet.

Love, deb

 
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Old 09-24-2011, 08:55 AM   #15
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Re: I ***HATE*** This Disease!!!

Just wanted to say - Meg & Deb - your collective strength never ceases to amaze me. You make me want to stretch myself - even when I don't feel like stretching. Hope that made some sense!?

Had dinner with my mom last night. She was going through alot of "what ifs" about my stepdad......worried that he's going to get to a state where they won't be able to keep him in the adult family home that he's in. I did my best to reassure her that I know the caregivers care very much about him, and I know they want to do all that they can to see him through to the very end.

I also told her about hospice and how that will be added care and assistance. I can be so *together* when I'm talking to her.....and then I come here and spill my guts! Love you guys!

 
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