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well, I;m back from our family trip,, to Scotland.. with my 85 year old mom and 82 year old Aunt. Plus hubs and daughter and fav cousin. We are all beat.. but Mom did her best.. although she was mad at me a bit for my over protective ways. And I may walk crooked for a year from her hanging on me. LOL At least my Cousin gets it.. bless her heart she slept in the room with them,, and was going insane from the piddling around,, and OK,,I have to say it.. or ask it.. do all old people fart and burp 24=7?? Then add the hearing aides and the loud talk about said F & B?? OMG !!! But I may never get caught back up here.. so I'll just catch up as I can!
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cwillie, thank you for the idea to go back to work at least part time. Now that my folks are with me I believe my principal would take me back full time teaching. I go up and down with it. I wish there were something like a part time teaching position. I could go back to teaching classes through the local university in the evening, and that would bring some income as well as some self-esteem. My husband wants me to get back into soccer because that improves my mood. So I'm going to try that (there's a summer women's league around here) next Tuesday. I truly feel like my life has opened up just living in my home town again. My friends are here, my job is here if I decide I want the full time work, and my family is here now. Two hundred percent better than last month when I was stuck in the lonely hellhole of my childhood hometown away from anyone I know.
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Well Mom's been on the down slide.. I just had Hospice here for her intake.. She'll continue with her regular HHA's and Senior support Day if she's up to it..

She turned 94 in May and the last 3 mths she has had a rapid decline.. She is incontinent, can't walk without help, anxiety is elevated..She needs wheelchair at Day Program. The walk from parking lot to building is exhausting.. She been choking on clear liquids. The last 4 days she slept 14 hrs straight. Last night she was up 8 times calling for "Gold help me"..


Too funny thought right now she eating a piece of cake with a fork all by herself.. Tomorrow she'll look at the fork like it's a foreign object. Lol..

I knew this day would come and actually I'm relieved to have someone to lean on.. I can get all questions answered..Even if they seem dumb..
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Genevieve, would it be possible at all for you to work part time, just a couple of days a week? I think it would help you feel more yourself, give you relief from the constant caregiving as well as provide a modest income.
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Hi, Everyone, I'm doing okay today considering. Dad is now on morphine and melatonin. I call it M&M magic. It helps him to sleep and breathe. He was half off the bed this morning and I put the bed flat and pulled him back up on the bed. He was supporting himself on his hands, he's a strong man, but the position looked pretty awkward and unsafe. Mom is sleeping fine but that's not unusual. Today looks like overcast and hot. My son has to get up early for a work meeting. I'm torn about whether to get a caregiver in full time and go back to work next year and stay in my current school, or take the other year I already requested. This last year was quite a lot, what with being in my parents' home state and being isolated and not seeing my husband that much. I feel much more settled now in my own home with my family around and I feel like I could go back to work if my parents would stop having crises all the time, but my experience of the caregivers that we hired in their home state was just so up and down. I don't know, but we will make the right decision I think. If we can afford it I may stay away for another year. Right now things are under control and our expenses are manageable from savings. But is it fair to the family that I give up my identity completely (my work identity that is and my job I worked hard at for all those years)? I am torn. Maybe I have to sort through all this with a good discussion with someone or two and figure it out, ask some advice and then figure it out. I feel like I've already given up so much. Oh, well, have to wake up my son and husband so at least they can go to work. My work is here 24/7, so no place for me to go. A lot of folks coming by today. Two people from hospice and a caregiving agency to do an intake for my mom and dad for when and if I do return to work or even if I need a few hours for respite or to do things outside of the house. Take care and I hope you all have a nice day!
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Hi everyone. I'm sitting here with tears running down my face after reading everyone's comments. I can SO identity with snippets from all the posts. Sometimes I think I should feel horrible saying that it is good to know I'm not alone in my feelings about this disease, but I won't think that way! It IS good to know I'm not alone, they are my feelings and I'm entitled to them! I thought at one time I would waltz into mom's place and take over 'fixing' everything....wrong! Even though her mind would reset itself every so often, at that time there was still enough of 'her' left to put me in my place. Now, it is a different story. I look at this woman and think, that's my mom, but when I hear her talk or watch her listen, or try to understand, I realize my mom isn't in there anymore. Or, if she is, she is locked away somewhere deep inside that only she is knows about. We recently made a decision to place mom in a home where she can get the SAFETY and medical attention that my sibling and I can no longer give her. The staff is also very compassionate and friendly. It wasn't easy, hard decisions never are but, in reality, it is what was needed. No one says we have to like reality, just to accept that it is what it is. And so we did. We are processing her through Medicaid, hired an attorney to help us with it (best idea) and now I find I can be with mom without having resentments. This was the best gift I gave myself, to let go of the resentments. This 'Long Goodbye" is a horrible disease from which no one to date has recovered. I hate it with every fiber of my being for robbing me of someone I love. At least with other diseases there May be a possibility of recovery. So in knowing this, I've come to realize that we each may need to make 'hard decisions' that will be best for us, the caregivers, the survivors. Love, courage, understanding and strength to all.
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bookluvr, I had the same thing with cleaning up after caregivers. Even my very experienced one, who I thought had everything wrapped up like a package. She would take care of my parents of which I am forever grateful but she always left me four or five load of laundry to do (mind you I would be getting back into town after a visit with my hubbie and kids and I would just have been driving five hours or so solo). So the straw that broke the camel's back was after my dad's bout of diarrhea and then him pulling out his catheter, granted that was traumatic for the caregiver and my dad, and the nurses were rushing about replacing the catheter, giving advice on the diarrhea and whatnot, but then why not pop down and just place at least one load of laundry in the wash? No, it was all piled up in a mountain. Dad all right by that point -- the whole crisis was occurring while I was driving so I kept getting these urgent updates while driving. This, then this, then this. Things over which I had no control except I had to make the calls to hospice and get the nurse angels out, etc., so I had to pull over the car and stop and turn it into a medical crisis. Got home everyone was all right. I was grateful everyone was in one piece. My mom deals with all of it by being oblivious to the situation and just picking at her head more. But there was this heavy relief by them when I arrived like -- peace finally -- peace and things will be okay, because I just start pivoting around and taking care of all the little details. But the one of the mountain of diarrhea laundry left for me. And why she couldn't put one load in. .... I was doing laundry the rest of the day along with putting everything else together again and then it cemented my decision to bring them with me. And I did.
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Actually full disclosure one of my sibs to give him credit actually did "try" to change dad's underwear once; sib asked me to wait in the wings in case he (the sib) needed help. The sib. Mind you, he doesn't have nor does he want kids himself. But he is good hearted. It was a comedy, but sad at the same time, because sib was trying to get dad to "think" of the next step. I gently had to say that dad's mind as we knew it is gone and it is more kind to just guide him into the next step and kind of laugh about it; sib took it well but I did notice he never really hung around long enough for an underwear crisis again and he bid his goodbyes well before digestion really had a chance to work the wonders it often does. But I do adore this sib so don't get me wrong. Just thought I would share something funny. Hugs to my sib if you are reading this (not).
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PS...my dad is going through something similar like your husband. It's so hard to fight it when that hatred pops up... usually if he touches his poop and I have to be the one to clean it.
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Bettylu, have you seen Teepa Snow online YouTube videos. It's great to watch it once in awhile. To remind us how useless it is to try to reason with someone who has dementia - as if they are normal. She shows us how to rearrange our thinking, how they respond to us, etc.. Very very informative. I like her mini series about Visiting. She helped me understand why dad no longer smells things, love this food today but hates it tomorrow, etc... Being the true nerd that I am, I even took notes on each videos. It helps me focus on her words and not just casually taking it in. Then when I need something, rather than watching the whole video again, I grab the notebook and flip through it, read it. Need more info, atleast I know which video to rewatch.
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How am I? I feel dead inside. I hate this disease and getting to hate my husband. He forgets less then a minute after he is told something. I've tried to take hm to a once a month a month get together sponsored by th ALZ orgainization. The first time I drove over there with him, he refused to get out of the car. I read him the riot act on the way home, which made no difference since he didn't know what he did wrong. I told him if I needed help for him I WILL ask for it. I felt a little better getting things off of my chest, but it didn't solve anything. The second time I got him out of the car and we stayed the two hours. I saw him talking laughing and sometimes interacting with the other ALZ people, I asked him how was it and he tells me he didn't say much while there. He keeps saying he wants to die rather then be the way he is. I feel like I'm suffocating and my world is squeezing the life out of me. I'm waiting to be contacted by a social worker to see what she suggests.. I don't feel like a wife, just a caregiver. The straw that broke the camels back was when he was suppose to scrape all of the loose paint off of the BOTTOM of the front metal door, scuff the glossy paint and then prime it. Well, I had gone over all of the instructions many times, and left for him to do it. He didn't paint the bottom of the prepared door, but he did paint the white trim without masking anything. Making more work for me.Trim wasn't even on the radar of what he was to do. I came back from Physical Therapy and found the enamel primer paint on the railing going upstairs, on the light switches, walls and rug. How am I to contend with this? If we lived in a single family house, I probably would have thrown my arms up and say it really doesn't hurt anyone. I have to pick my battles. However, we live in a 5 unit apartment building which was one of our retirement plans. We have tenants and people looking to be tenants in one of our empty apartments. I just can not let his inability to do things that he used to do make our place look run down. Did I mention that he refuses to pay anyone to do the things around the house. I just do not know what to do. I wish he were in a home where I could go and spend Quality time and then go home and save my physical and mental health. If he were pleasant and agreeable to be around, this journey may be much easier to face day after day. Sorry for such a long vent.
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Yes, Gloriacoco and bookluvr, "Will you be there" because there might be a fluid issue. Or we might have to "translate" what their gestures mean. Not because they just genuinely like our company. Checking off their box. Yes, alone time is important.
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Sorry for my miss spelled words, sending from IPhone....
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Hi bookluvr, awwww I only hope she's doing well. Thank you so much for keeping me updated. This illness can certainly drive you to gave a break down. Isn't it funny when we offer up time for family and friends to spend a little time with our I'll family member their first question ia "oh will you be there".... I will say that time alone, whenever you can get it", is so soothing. Please stay in touch, we need each other.
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Ha, ha, bookluvr, soooo funny. Yes, my sibs disappeared into the woodwork when I offered to teach them how to change the underwear. Hahahaha. That's all it takes for some, a little body fluid. Wonder how they cared for their kids when they were tots; left it all up to the wives no doubt.
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Hi Gloria, Jam was a wealth of information when I first found this discussion. I haven't seen her post here in a long time... About friends and family giving advice... I smiled when I read your response. I did the same with my older brother. He was visiting from the mainland and was watching me change bedridden mom's pamper all by myself. Sitting down, he decided to give me a tip on changing pamper. I immediately stopped, looked at him and asked if he wanted to take over. He quickly shook his head.
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Hi Jam, I can't tell when you posted your concern so I hope my comments can still be of some help to you. First, I admire you for taking care of your mother-in-law, you're a very loyal woman. In all honesty, I would only do it if I was the only daughter-in-law and there were no daughters. And if there are other family members you need to get them involved, she's also a part of them. This is a tough job, it's worst then having a real job. My sister and I care for our mom and even with her help there are times (more than none) when I feel I don't want to deal with "Dementia" anymore, I just don't want to do it. I feel like I go around and around in circles because she's lost her sense of logic and reason. You are right having to deal with the same repetitive behavior over and over is very stressful, only we know how difficult this is. So when my friends and family members (who have never been there) "try" and give their opinion, I don't hesitate to tell them "why don't you pack you a bag and go stay with her a couple of days then we'll talk. Jam, there's nothing breezy about caring for a person with this illness. I look forward for the caregiver to arrive to help with mom for 4 1/2 hours. She qualified for assistance because she has zero assets and her monthly income is close to nothing. With the caregivers help I can go exercise and go home (40 miles) away to see my husband or sometimes just go sit in a coffee shop and read. If my mom would have had resources, we would have more than likely found a good assistant living place for her. We also have notes posted for her not to many because that will only get her more confused and they do help. Our notes are "mom today is _______" June 16, 2016 or "Please drink your coffee" or "Take your vitamins" (with a follow up check). We don't have mom on any memory medication we felt it would harm her more then help. We'll go have dinner with her granddaughters and by the time we drive out of driveway she's forgotten (very heart breaking). Mom's sun downing starts about 2:30 pm and gets worst around 5:00 pm. She gets a tad argumentative and paces from room to room, so the less I say the better I have control of my stress level. I love having my AT&T tablet with me, I can hang out with you all and destress. Please stay in touch Jam and keep us informed. God bless.
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Puzzled. I don't think I will ever understand sis' reasoning. She only does things if she must but just enough to do what she needs. Won't empty the sink drain strainer even if the food in it is an inch thick and spreading across the sink, flooding with very very slow drain. Most times I empty it several times a day even if I just ate 1 meal the whole day. I have to use the plunger at times due to clogged pipe. .... I clean the toilet. Not even 24 hrs later, the toilet bowl is disgusting. How hard is it to flush 2 or 3 times and pour water from the Tupperware bowl (stored in the open bathroom shelf) to clean the mess while it's still fresh?...... Why change dad's pampers last week and dump his soiled clothing in the kitchen and leave it there? At first, I thought she had put it aside to be washed in the morning. Well, it's been 8 mornings later and his soiled clothing and bed linen are still there. Huh? Why!?! If she doesn't want to wash it, THROW it out! She knows that I do this if dad's soiled clothing is too disgusting to wash. (Our outside washing machine is only hooked up to cold tap water, one machine for us to use.) I refuse anything that is heavily soiled with poop goes in that washer. Throw it is my motto.... I saw the clothing was still there lastnight. I need to ask sis why she's keeping it there. Throw it or wash it. But don't leave it forever in the kitchen. Okay. I got my frustrations out. Time to clean soiled father. He made a mess this morning based on the poop I smell. Please don't let it be so bad as it smells.....
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Susie, it's good that he's still able to go on the cruise one last time. And that he's aware of it. I was getting worried that it was going to be only you and your husband taking care of him. Whew! I was relieved when you said that there will be other family members going. You all can share on keeping an eye on your dad.

So I hope you all have a great time!

P.s... I too have found out that if I talk to dad, he's a nicer person. Most of my family ignores him or don't go out of their way to talk to him. Midnight. I'd better go to sleep. I get up at 6:30.... Take care...
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Just chiming in to say that this forum has been a lifesaver for me. It's easy to lose perspective while dealing with a loved one's dementia. Seeing what other people go through has made me realize my situation could be so much worse. After a few months with my FIL, I'm finally able to zen about his inappropriate behavior toward me. It's one thing to know intellectually that he can't help himself, and quite another to accept it and deal with him gracefully. So every morning, to lessen his isolation, I sit with him a few minutes and listen to him wheedle that he wants me to crawl into his bed with him one morning, or for me to let him kiss me, or whatever romantic notion has hold of his mind that day--and then I go about my day. It's like Groundhog Day, no matter what I do. If I get mad, it doesn't change things. If I reason with him, he doesn't understand, and nothing changes. So I just let it happen and move on. It's going to resume the next day no matter what I do. Same with the hygiene issues. This board and the kind people on it really helped with that. I needed to vent. LOL

Now my husband and I are facing our latest challenge: in a week we're taking Dad on a cruise. When we booked the cruise, he wasn't quite as bad as he is now. He may have gotten worse, but he knows he's going on a cruise and he really wants to go. We've cruised together with him for over 15 years, a cruise a year, so it's not like this is new to us. But the challenges might well be monumental and we're stiffening our spines, hoping we can make the best of things. We've taken steps to be sure we can see to his needs, particularly in hygiene and mobility. He sees this as his last cruise (and it will be, because I can't see doing this again) and is looking forward to it. My husband and I aren't alone in it, either. We cruise as a family, every time, so there will be other family members to help with him.

So that's how this caregiver is doing. Currently mellow, hoping for better, pretty sure that's unrealistic...but this is a much better place than where I was a month ago.
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Pam, did you know that iguanas bite? I don't know why I should have been surprised about that when my niece told me that. We have iguanas, too. But not in our area, too much modernized buildings.

Hi Genevieve, glad you're doing all right. Better than having a lousy day. =)
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Hi, Jam, thanks for asking the question. Doing all right today. I hope you have a great day today!
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Book when DD and I went to Mexico they had huge iguanas that were all over the resort... kinda pretty.. but creepy too. I had to check the room at night!
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I'm not afraid of lizards as long as they leave me alone. Came home late from work yesterday, pulled the empty trash bins from the dirt curb into our property. So I enter the kitchen and was washing my hands. D*rn lizard jumps from the sink and almost landed on me. Scared me so badly, I screamed loudly. Whoosh! The adrenaline rushed to my head and resulted with a terrible pounding headache. Went into the Livingroom and had to sit down with both hands clutching my head. That was one of the most painful sudden headache I've ever had. It's very similar to getting a cold head rush when you drink or eat something cold too fast. Boy, did that hurt!
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I've also asked the nurse if they know of any programs in which we can hire someone to help dad get off the bed onto the wheelchair, accompany us to the dental clinic, and help him get up/off the dentist chair. I explained that dad doesn't trust family to assist him. He trusts 'professionals' more than us. She's going to check her boss if he knows of any program.
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Home care nurse was still here when I came home from work. She was changing dad's catheter, bag, etc... She kept talking to dad, trying to make conversation, because he was in so much pain as she was inserting it. Dad was obviously in pain and clenching his hands tight. I knew, based on the past, that he will one day punch the nurse. At the moment, he still has control. I think the nurse knew he wanted to hit her - hence her trying to get dad to converse with her.

I decided to postpone my dinner and help her out. I started telling her funny stories about dad by trying to get dad to tell it to her. He was not having it - at first. But the more I talked and laughed, he started to loosen up a bit, and the nurse was able to finish up. As she was cleaning up, I saw something red go rolling off the paper thingy. I said, "Don't forget that one. Just looking at it is making me queasy. I'll never make it as a nurse."

She took his vitals and then started doing her chart. Since I was on the roll about dad's 'funny' side, he finally joined in and joked back. He laughed so hard, the nurse was shocked. She kept staring at him, at me, at him. She told dad that she has never seen him, in all these years, laugh like that. She said that he looks like me when he laughs. Hey!!! That's not a compliment for me! That means when I laugh, I look like him! She repeated again that when dad laughs, he looks like me. She said our face lights up when we laugh. She kept staring at dad with amazement.
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I was changing dad's pamper when I suddenly stopped. I forgot what to do next. I stood there staring at his pamper area, confused. Puzzled. I just stood there staring, lost. Dad looked with a question on his face. Then, I said, "Oh, yeah, now I remember! It's time for you to turn, now." Dad gave me this worried look because I've been very very forgetful lately.

As he turned, I looked him in the eyes and said, "I'm getting so forgetful lately. I actually forgot what to do next - and it's just changing your pamper! You know what this means, don't you?"

He looks at me silently with suspicion. I quietly and very seriously continued, "Because I'm so forgetful now, I'm forgetting how to change your pamper. This means that I should no longer be changing your pamper."

He laughed so hard, as if I was making a joke (Not!!), and shook his head. He said no. D*rn, I will keep trying until I wear him down...
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eeek bookluvr you and me both re the heart attack I know it is depression but like you aint gonna do squat about it...beam me up scotty my time here is done
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Came home tonight hearing oldest sis getting mad at dad. I overheard heard angrily saying that she's not his wife. Sigh... He's only beginning his journey down the senile road. I don't know which one of us will crack first. I've been getting chest pains. Won't see the doctor. Part of me is hoping I get a heart attack and die. Or get a 'Skip' card from caregiving. I wonder if sis thinks like that, too. Obligations- family, culture, religion and conscience can be the death of you.

I'm late changing his pamper by one hour. I'd better do it now before he decides to stick something into his pamper and pull out 'the dirt '....
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Hi Pam, that headache on May 25th was one of the worst migraines and sinus headaches I had in years. But Not THE baddest one (completely bedrest with no relief from the pain. Thank goodness!!!). My sense of smell was so sharp, I didn't dare change dad's pamper until the pain went down -finally at 10pm. I'm fine now. Being proactive. Wear sunglasses to/from car and building since then. Still got headache from the very bright sun. So today, I started wearing my cap along with the sunglasses. Wow! It sure makes a difference! I have a hair bob so the cap doesn't even mess my hair at all.

I'm glad that your friend's fundraising was a success! When I read that your mom had a blast and what your hubs said to her - just made me smile so widely. I'm glad for all of you - even You!
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