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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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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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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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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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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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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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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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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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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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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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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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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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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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watched
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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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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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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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I could truly make a funny movie about care givers,,,,I am serious. But, I want the lead part.. LOL
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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 watched the movie on the plane and fell asleep at the ending. The movie was on the 'dementia ' person's perspective. I've bought the book weeks ago but never got around to reading it.

There is a book that I had stopped reading (prefer fantasy books to take me away from everyday life) that is based on the caregivers perspective. She agreed to take mom to her home. Found out that the 2 bedroom house was a bit small for 3 people. She wanted to use mom's money to build an extension on the ground floor (bedrooms were upstairs) for mom and her sister refused. So, she gave up her bedroom to mom. I gave up reading it because it was reminding me so much of mom and us... I would give you the book title and author but I'm not home. It's Not an ebook which I would have been able to give you the info.
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Just wondering....has anyone seen the movie 'Still Alice'? It kind of irritated me that it didnt show more realism (in my opinion) of the caregivier side in terms of suffering (frustration, anger, etc). I think thats as much a reality of alzheimers as anything.
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http://www.mmlearn.org/ is the learning site for caregfivers - most of it is free too
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Since bro installed the portable air con, I've been waking up with a pounding headache and backache on the right side. This morning was really bad. When I walked into the bathroom, the headache lowered. I can't handle this as my flight nears. I cannot handle flying with a pounding headache. Bro also has a very very old carpet. The same one that was here when he bought the house. I've told bro that I would like to try sleeping tonight on the livingroom sofa. (Even at home, I get head and neck pain when I sleep on the sofa.)

I saved a yoga exercise for neck/headaches in my laptop. I didn't on the kindle. IPad is recharging. I started taking the decongestant pill and nasal rinse yesterday in preparation for my long flight back home on Tuesday. I will find that video!
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3 hr sleep only. Sadness within that in 3 days I will be flying home. I went through this the last time I went to Colorado.

I bought one of those bath sponge with a scrubber on the other end and pre-soaped. I've never used one before. I'm loving it. I don't know the practicality of using it back home with the humidity. Everything gets moldy so fast if you don't have constant air con. I will see if keeping it in the livingroom will help.
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www dot mmlearn dot org
or www.mmlearn.org if that works!
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Jude....whats the name of the site again that has the videos?
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Thanks Jude :) Thankfully I only stay with her about 8 hours each weekday, and then I get to go home to my lovely family. Some days are definitely harder than others; today is one of the better days, actually; and usually I wouldn't get that mad about a birdcage, if she had just let it go instead of going on and on about something so trivial.
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Ya need a break leah - watch out hun - this is a really tough road and it isnt her its the disease - repeat after me its the diseas I hate. xxxxx Get some respite before you burn out baby xxxx
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Well, I'm doing alright right now. I already had a confrontation with great-aunt Y this morning, over the birdcage (she wants to uncover the poor thing early in the morning while it's still asleep; it's cage is on top of the piano, and she's already knocked it off twice in the last two months, traumatizing it I'm sure; so I told her I'd uncover it at the usual time and she started going on and on and I finally slammed my fist down on the arm of my chair to get her to STOP and that of course made her madder; oh well). And then just now she wanted to know where her son had gone. I don't know, except that he has errands to run, but when I told her that she got that mad look on her face like I'm not telling her the truth. I have no clue what she wants, but again, oh well. I'm sure she's already forgotten about it right now; I can hear her puttering about in her room.
She threatened to fire me the other day. This is a new thing for her; a few months back I lost my temper and told her that if she thinks I mistreated her like she says I do (mistreatment meaning, not getting a snack every twenty minutes) then she would jolly well have to find someone else, and she was all like, "No, I don't want you to leave. Why do you dislike me so much? Blah blah." Well, she's always been manipulative like that. But now she's threatening to fire me, although she isn't even the one who hired me. And why did she threaten that? Because I sassed her a bit after *she* got mad at *me* for no reason.
Ah, such is life I guess.
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ladies ladies you need to be careful....for everyone I have found some free videos for caregivers: mmLearn
Loads of stuff on there
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