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I agree with Jude, be careful. When my guy angers me, I usually walk away and go to another room for a few minutes and then come back. Or, I am just quiet until he says, did I say something wrong. No honey, I am just tired. It is not the person, it is the illness. Think,,,,how would you like to be treated when someday soon you are the one being cared for. I try to remember to do what I would want done to me. I know it is hard, but give it a try. Truly loving the patient doesnt make it easier as I remember when he was not the man he is today.
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I could truly make a funny movie about care givers,,,,I am serious. But, I want the lead part.. LOL
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Go with this book and you will feel fortunate. I am reading Bill Orieilly's book Hitler's last days. OMG, what a sick man that was...But, I love history.
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Dad's doc appt went well. He remembered his birthday when asked! Lab results all really good. He just has a bad case of athletes foot. His feet have always been icky. So some cream for that until it clears up.
Took him grocery shopping he likes to push the cart. His eyes lit up when he saw sweet corn. Mom would always get some when she saw in the store. I know his AL doesn't serve so that's is an idea for a meal when he comes here.
A pretty good visit. The lorazepam has helped already with his anxiety. whew one less thing to worry about.
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Please remember that after they are gone - you will be reliving all the things you think you should have/could have done better. I know that 'this too shall pass' is easy to say, but not easily lived; especially when 'temporary' can be years.

The orthodontist told me today that my 'failed' root canal needed immediate treatment. As I had been in pain for days - I believed him. But as the words came sliding from his mouth; I hesitated - stammered, "Now?" In the back of my mind I was thinking .... is there someone I can contact to fix her next meal? Change her pads? How long will this take? Will I need a ride home? Can someone stay with her?"

He was agitated with my hesitation and what appeared to him as confusion as a million things crossed my mind - then he said sternly - "Yes. Now. If this blows up on you - I'm not the one you'll need to call next. "

Then it hit me. My mother is dead. I don't need to rush back to make lunch, change a pad, check her fluids. I laid back and felt the needles, drills, etc., and as the tears ran down my cheeks, he thought I was upset about the procedure.

But what I was really thinking about was that it was 4 weeks, to the day, that I watch my mother take her last breath.
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watched
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Sam....i have thought this many many times...and my mom is alive and in the moderate stage of ALZ. I think about how i will feel when shes gone and what i may regret if i dont handle everything the right way.. Its so hard to maintain the right attitude with such massively frustrating situations...and we are not perfect and never will be. I know, well i think, we are all doing the best we can and have to forgive ourselves for the moments when we dont live up to what we expect of ourselves. And i know my mom would always forgive me in her right mind.
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Sam, your story was so touching. I can relate. What is it with root canals? Before I became a care taker, I hadn't had a cavity since 1979!

I met my loved one at the doctor's office today. Thank goodness he put her back on Cymbalta. She was so content and happy when on it. Taking her off was a huge mistake. Now to wait for it to take effect.

I'm wondering how things are going to be when she's gone. Her checkup was good, except she has lost 10 pounds in 2 months. The doctor says she's doing well, but I know she doesn't look right. She's eating, but still losing.
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I biked over to Dads today and we sat outside for a bit. He doesn't talk much as he gets words mixed up so we usually sit in silence.
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Sunnygirl...my mom has lost quite a bit of weight over the last year. Dr hasnt commented on it...her next checkup is mid July and im curious to see what she weighs. I have noticed that her appetite has changed a lot...and she eats sweets a LOT. But i figure if that makes her happy, then its ok as long as bloodwork continues to be ok. I have a lot of anxiety as i always do before her checkups, to see how the memory testing goes. She no longer looks well...as if i can see the disease taking over.
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57twin...mom doesnt talk hardly at all unless i talk about something first. I can tell she no longer has anything in her mind to talk about...all erased. She will comment back to me on whatever i talk about...but thats it. It hurts since we have always talked and laughed all the time. I try to bring up funny things from way back when and she is able to laugh and remember. But nothing of the present is really left.
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Sam, I had the same thing happen when I lost my husband. He died at home, so I still felt his presence or at least knew he had been in our bedroom when he died A storm broke and there was lighting and thunder I woke up and looked for my husband and wondered where he had gone. I started yelling his name and walking to the front door wondering why would he go out in this rain? I even asked the dog..And, then it hit me, and my dog and I went and sat on the couch in the dark and cried. I took care of him for 10 years. There were bad times and good times, but I knew I had done all I could do. He was so appreciative and I will see him again soon. The Partner I am caring for now is so much different and so dependent upon my care. He is so much more difficult to take care of, but I will get it done and do it right.
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the first thing i need to say is Thank you for this forum to have access to type here any time to get frustrations out. 2nd my Mother just passed from all of her pain and struggles are over. many times she would say hurtful things to me in her anger and frustration, i know she did not realize how hurtful they were to me. I was with her almost every day for 8 months 2-3 hours a day to speak for what she needed when she was unable to. Taking care of her little things she wanted something all the time and she was in a nursing home 24-7. She had some dementia and remained bed ridden most of the time she was in the NH. She gave up way to early in the process.
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I will catch up later on. Just checking in. Finally arrived home and out the airport at 11:45 pm. Showered by midnight. And spent 3 1/2hrs looking for my purse with the house and office keys. I looked at all my purses in the bedrooms, living room. I can't find it. D*rn, I'm going to have to call my boss at home that I can't open the office today. My alarm is set to go off at 6:00 am. 2 1/2 hrs of sleep today.
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SherylBeth,
I know what you mean. She eats fine, yet she is still losing. She doesn't have much to say anymore, though she was THRILLED when I walked in to see her today. She normally doesn't watch tv, but today a preview for the Glen Campbell movie was on and she was all excited about it. Isn't that ironic? Glen Campbell is in a Memory Care facility with AD. She doesn't understand that though.
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Book glad you got home safe and sound. It took us over an hour to get home from AP on our trip.. I envy you! You were very near where I live on your trip.. maybe next time I will be home and we can meet?
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Pam, we can meet and still play tourist? Kill 2 birds with one stone? My bro and his GF says I'm such a tourist. I think I even embarrassed bro several times. Whether he's driving or walking, I would pull out my camera or iPad and start taking photos.

Like this photo of the stork, swan? It's very close to the Cheesecake Factory. FYI, when bro finally persuaded me to go eat there, I truly thought they only sold cheesecakes. I always wondered why they are so busy. We sat down, I opened the menu, and exclaimed, "They sell real food!" Expensive, too. I chose an appetizer (Mexican egg roll). After eating, I ordered blueberry cheesecake (bro love blueberry). I Rarely eat desserts. But since I'm there, I might as well order one.

Sorry, too tired to read and comment. I ended up sleeping at 3:30am because I couldn't find my purse which had All my keys (work, home). Then woke up at 6am. I was driving home at 6:30pm, swerving (the sound of markers woke me up. I was terrified driving home because I kept falling asleep and then jerking awake. It
s 8pm, and I'm so sleepy. Reading here blurs.
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Eight days since my mother passed. The weight of constant responsibility and the state of always being "on high alert" is ebbing away. I can feel the tightness in my shoulders finally releasing little by little. She never wanted to be a burden. She was the most gracious, kind, wonderful person to care for. She never failed to say "thank you" for whatever I had to do for her. Yet I never managed to find a way to do the job without feeling weighted down by the endless chores and the huge needs of a helpless adult. I miss her so much, though. She was my mother but also my best friend. Yet I feel free, almost giddy with possibilities. Today is the first day - counting having the care of a daughter, granddaughter, and my mother -- today is the first day in 25 years that my schedule has not been set by someone else's need. Now is when I find out if I can care for my own needs, and set my own schedule for attaining my own goals.
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I think one thing that causes me to feel scared is the uncertainly of how long I will be responsible for my loved one. She is my second cousin, though most people who deal with her think she's my mom. I think I treat her pretty much as most people treat their mom who is in Memory Care.

It's that constant feeling of having to be available, having to be ready to make crucial decisions and never knowing when she will be gone. It's such an awesome responsibility, but demanding as well. People have no idea what they asking from someone when they name them as their DPOA and HCPOA. It does take a part of your life away.

Sometimes, I wonder if this was my purpose in life.
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Book, I hope you are tired because you were so busy from your trip and not that you couldn't get any sleep. I remember reading one of your posts about the sleeping conditions. Here is to you getting plenty of rest!
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Lynne, my condolences. You did your best towards your mom despite the hurtful things she said to you and understanding where it was coming from. No regrets, no guilt (even though it might pop up once in a while.). Like you, I found this site very, very helpful. I was new to being prime caregiver and was panicking. I googled on how to caregive 2 bedridden elderly parents and got this site. {{{{hugs}}} to you.
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Singing, {{{hugs}}}.
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Shilo, I didn't get much sleep before I left home. Then in VA,I was having problem sleeping. I did finally knock out on the long flight back home. It's a combo of lack of sleep, jet lag and over-extending myself with activities. I'm still tired. I went to bed early,11:30pm. And woke up wide awake at 2am! I'd better change dad's pamper now.
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Book, I haven't posted on here in forever! Glad to hear you got a break...wish it was a longer break. Miss LadeeM on here. She kept this thread going. Ladee had so many wise words and you do too. You are a treasure. Know that and live it kiddo.

I finally had a breakthrough with my mom. Been visiting her every other day for almost five years. My son starts college this fall and I need to get back to work to afford it. She would have nothing to do with it and blamed me for her being in assisted living. Oh, did we have it out! It's certainly not my fault her knee broke three times, or that my dad died of brain cancer or blah, blah, blah. Not once did she blame my brother who helped clean out the house and stayed behind to sell it. It was all MY fault for all of her problems in the world.

That corked me off. After all I have done for all these years. I will see her two times a week. No more every other day. She burned her bridges with me big time.

Sometimes one just has to step away. I am 55 and need my own life back.
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Book, did you ever find your purse and keys?
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Glad, I stopped looking for my keys at 3:30am. The next morning, I stood in my bedroom entrance and asked myself where did I have NOT looked at. My eyes immediately went to the glass book shelf. As I got close, I saw my purse. This was found about 8:00am.

Wndy..my brain went blank. Sorry, too tired to think. Hopefully tomorrow won't be so bad.
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I had only 8 months of dealing with my mother daily we had many ups and down, days I got so mad and said I won't see you because of their behavior. yet I was the only one who suffered because of dementia it either seemed like i never visited or she did not understand why I was always angry or upset with her. Not that she has passed I have to live with the hurt feelings and wish I had been less hasty to be angry when she said hurtful things. I know it was what ever was going on in her mind at the time. She needed me to be there for her and I feel I was mostly but sometimes I feel guilty I did not do right for her at times. Now that she is not there to visit anymore it still is too soon to sense it is no longer needed for me to visit her. I am sure you will feel it even more after going 5 years every day. You need a break but remember she is not going to need you forever but just a little more of your time.
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Lynne, I understand the anger and the angry words. When mom was first diagnosed with dementia and the neurologist had a meeting with dad, oldest brother and me, he emphasized that we have a long hard road ahead of us. It will require the whole family to pitch in (I have 7 siblings). I took him seriously. I was about 23 years old. His long time is different than mine. I thought a couple of years. Instead, it took 23 (24?) years before mom passed away.

Dad has started this journey about 2 years ago. I try hard to not get mad at him but... I'm just so tired of this caregiving, especially to Him... Very dysfunctional childhood which includes various abuses. I'm no longer a child who must take the abuses in silence. I find myself rebelling, resisting and losing my temper.
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I think we all have to recognise one thing. CAREGIVING IS BLOODY HARD ON EVERYONE.... SO IS DEMENTIA

Mix the two and you have serious problems to deal with on a daily basis. I repeatedly say on here that you dont have to be a care-giver to care and being someone who cares doesn't make you a care-giver. Moreover just because you are a care-giver TODAY doesn't mean you have to be forever.

I think we are all encouraged to believe something else because it suits the state, the doctors, the service providers, the family, the neighbours, the grey 'they' who spout utter twaddle for the most part.

Lynne please don't beat yourself up. That you couldn't handle or manage the dementia in your mum is just what dementia is all about - it fluctuates and exaggerates all their traits good and bad. It never seems to be the same from hour to hour let alone day to day and when you are right IN there you can't be expected to stay calm all the time.

I think when someone is 'in your face' or consistently asking you the same question over and over and over you do have to walk away and take time to calm down or you would go insane.

You tried your best hun .. be content that you did try - many don't try and don't care either. All of us on here try our best...is it good enough? That's not for us to judge but we share one thing WE STEPPED UP TO THE MARK....while others often did not
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Jude, your comments above should be read and passed around to the many new posters on this forum. Especially "being someone who cares doesn't make you a caregiver". You have also been very supportive to others, just wanted you to know your efforts are appreciated. If I ever had a question, I hope you would be one of the many good people on here to respond. I am looking to the UK people on here because their culture appears to be polite.
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