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Good Monday Morning Friends. At 10am CA time, I will get my first break with Mother since Thursday at 8pm. I am beat. Need to call doctor today to find out if Effexor she started last week is causing her to sundown every 2 hours starting at 10 am, until dinner at 6. She insisted last 3 days she HAD to take a nap in her bed, not on the sofa by fireplace wrapped up, feet up--very cozy and in room with me, or family when they visited. After 10 minutes, she was crying, saying,"made a mistake", shaking the guardrail, "let me out of here"!, etc. However, she got me to take her there 4 times, as each time I think she meant it, and I am trying to make her happy, comfortable, etc. Does anyone have any advice? She also wet the bed last night at 1 am, which she doesn't usually do, and remarked, half asleep,"this happened once before"--which it did!!! Weird how she comes up with factual memories, but rest of the time she is imagining people, fear she will be left alone, thinks people are mad at her. She has been irritable all her life and a bit paranoid. I guess I should be happy she is not more miserable. Anyway, if anyone reads this, I need some help. Maybe I should go to a different thread? Thank you. christina28
Good morning....sorry about your wrist Peach....gonna be a round of antibiotics for you I bet. Hubby woke me up when he got home from work, got up and took doggies out, lower back was hurting so bad I went and laid down on the bed and promptly fell back to sleep and dreamed about chipmunks in the fireplace and drowning babies.........good God is my mental status just a wee bit stressed?
christina - sundowning usually doesn't begin until late afternoon or evening..when the world is starting to slow down and darken.....I finally realized that's why mil leaves all her lights on.....it's sounds to me like the Effexor is what is doing this. Talk to doctor, he may want to give it some extra time until she gets used to it or change and try something else. When Lisinipril first came on the market I can't begin to tell you how many times I would ask a patient what was going on with them and get these bizarre symptoms....I would ask if they had started Lisinipril......"yes I have".....alrighty then. Some drugs are not right for some people. May take some trial and error before the right one is found.
Jam, I was put on lisinipril once and had to go off of it, I was coughing all the time, went to allergy testing, and nothing turned up. It was the lisinipril. Hi Christina, good luck with mom. I think effexor is a stimulating antidepressant, not sure though, hope the doctor can help. Some people like namenda and I have my mom on a low dose of Trazodone at night to help her sleep. That's all I know about that. Glad you'll be getting a break today. I'll have a break tomorrow for a few hours, looking forward to it. ssk
I think there is a big difference between anti-depressants (for example, Effexor) and dementia meds (for example, Namenda). Mom did very well on Namenda and Aricept for her Alz. We tried an anti-depressant with her and she did not do well. However, when she started the hallucinations, etc, an anti-psychotic served her well. And yep, everyone is different.
it's hard work doing all of what you are doing. your mom can and will see things, hear things and still floor you by remembering something exactly as it happened. The disease is progressive so cherish that you have this much interaction because it will disappear.
As far as sundowning every 2 hours, I think that's the drug.
I had mom only on blood pressure med, Namenda and Aricept because most elderly people are WAY overmedicated. It's actually kind of wierd to try and use psychotropics (Jam, right usage?) when you're dealing with dementia. I know that there are many schools of thought on this and my experiences with dementia are going to be different than others', but with what I have read on this site, I think that a lot of people would be better off without the psycho side affects because the disease itself is going to give you a host of symptoms and that's just the disease. you can't stop it or even slow it down by much. For me and mom it was easier to know what was what without getting confused by a mood drug.
Mom's stomach would rumble when she was digesting her breakfast and she would get confused, think it was growling from hunger and accuse me of not feeding her. she couldn't tell that she had just eaten, nor could she feel 'full'. She would ask for something, get it and then not want it. Over and over and over. That's like the nap time in the bed, etc. i would get forceful with mom, not mad, just take no prisoners style and tell her, Look, you're safe and sound and let's nap right here and you have to trust me when i say that you'll just hate it in your room in the next 15 minutes. mom and I also had the 'you have dementia' talk. I felt and still do that some folks need to know what the hey they are facing and why they're acting all crazy. Some dementias you can do that and some you can't. With mom I could and it did make it easier because i would say: That's just that dementia making you do/say/act like that. it got to where I could define a behavior to her as part of the disease and I could see that it was way EASIER for her and therefore easier for me. Even in the flurry of writing about being grossed out, I tried to create a safe environment of 'no shame' for my mom. I told her that there was nothing that she would/could do that would make me not want to be with her and help her.
At this point I would like to address something:
For those of you who haven't quite wrapped your heads around the fact that the person you are taking care of is going to get much much worse, please listen.
If your parent lives alone and they are wearing diapers, YES the diapers will be dirty when you show up. If your parent is walking around in dirty diapers, they should not be living alone. They are not trying to be gross, it's the disease.
If they cannot feed themselves or throw away what you make them so they are not eating, they should not be left alone to feed themselves because they can't. It's the disease.
Someone in a good humor has to sit there and make sure the food goes in.
Someone with a good humor has to make sure that their ass is clean and shiny all day every day, not once in awhile.
If someone is suffering with Dementia, there comes a time when you have to take on that care 24/7 or make other arrangements. They can't be next door, upstairs or across town. It won't work and it's grossly unfair to them. They're sick. Even with my mom and the fact that we had a rocky time when I was growing up and beyond, I wanted her to always feel safe.
This is way more terrifying to them than it is to us. Another reason I don't like psychopharmecuticals because you don't know where you are in relationship to the reality of this progressive disease.
That's it, I am done.
Still don't feel good, but wanted Christina to hear from someone who has completed this journey.
Jam, I thought Lisinopril was blood pressure med? Doctor just took my Mother OFF that for good last week. She is on Exelon patch 9.5 in morning, seroquel 50mg at night, with Ambien 10 mg for sleep. She never sleeps unless she is on anti-depressant, but was on lexapro only 1 week, now effexor 4 days. Bet doc will take her off that too. Thank you for your help.
christina, forgot on my last post.......I prefer Lexapro over Effexor....but talk to your mom's doctor. It usually takes a week or two to notice if a med is helping. miz----you and I are in that same BOAT right now with our recent loss, it hurts and will for a while, but we WILL go on. You cannot question yourself----will it change the end result? No----God was ready for mommas and anything we might have done or thought would not have made a difference. Sure I could have left my mom in the hospital being sedated around the clock and she would have died the same day, at the same time but in pain. I chose to make her last hours as pain-free as possible and now I realize how much better that was for her and ultimately myself. Over the past 25 yrs in EMS there were so many times that I would sit after a call, while writing my report, and think well maybe if I had done this, or maybe I should have tried this, or if I had done this would they be alive. I drove myself crazy! Only God has the ultimate decision on when and how. If we all sat around and worried about the "what if's" we would never get anywhere. Concentrate now on the wonderful memories, the happy times. My hubby said something to me the other day that really got me thinking.....he said if I was truthful with myself I would realize that part of the reason why I feel so sad is because I am "the next generation". Well dear you are so right...............so now I am going to concentrate on my life and what I can still make it. I am going to make sure the COL is taken care of so I will never ask "what if". And when her time comes I will make sure she goes to the light peaceful and as pain-free as possible. Do you scrapbook? That helps me a lot, right now I am working on my family heritage, grandparents, parents, etc. and the pics and journaling takes my mind to pleasant places. Hugz!!!!!
Thank you, bobbie:) Yes, I know she will get worse, already showing that. She was in a residential care home before I brought her here. She was falling and when I saw the bruises and addressed the live-in caregivers, they looked at me blankly. The owner of the business never would give me any feedback from my phone calls, emails, asking what can I/we do? It was almost as crazy-making as dealing with my Mother. When I was going every day at different times, staying for an hour, then practically all day, my husband said,"let's bring her with us." So, it's OK to tell her she has dementia? Guess I am so used to dealing with her denial of most everything her entire life, I hate to put be the one to burst a last bubble, but it is the truth, and I have always been the one in the family to deal on that level. Thank you for taking the time when you are "under the weather", Captain. Thanks to all of you.
From Ted about 9:45 AM EST reply from my email 12/19:
Hey, Sorry I've gone silent. My interent went out and its gonna have to stay out for a while. Please send my love to everyone. I'll check in now and then but I won't be able to be in constant touch Thanks for caring, Ted.
They putmy husband on lexapro and he just went downhill. Every day you could see a change for the worse. I took him off and in 2 days he knew who he was and knows me most of the time. The problem is he goes back next week and I'm afraid of what the doctor will say to me for doing it.
somebody mention exelon patch . my dad was on it and lost 30 lbs in one month and was dying from it , my dad used to love to eat and pig out but couldnt do it anymore . everytme i put that patch on him i felt errie about it , finaly one day i said oh hell dad u d o not need it , i took him off of it and he gain his appitie back . ate like theres no tmr and he felt better . that exelon patch was killin mydad slowly , then saw a warning on tv if u have those side eefect to stop using it cuz it will kill you . my dad doesnt need any of meds for dementia or alz , he still has his mind , he used to take a hand full of pills and i ve weedin em down to 4 a day , 4 at night , i let the dr know about it too . i wanted to get him off one for antidpression dr said ah better keep him on it . sometimes i give to him and sometimes i feel nah dont give it to him , those pills scares me . i do believe its killin our parents , bp pills heart meds prostate pills are in neded so he sticks with it . those dr is just using our elders as a rat lab , try this see if it works , try that see if it works . blah blah . when u get the errie feeling , nagging feeling , listen to it . xoxo
Thank you, ddotal. I will stop the anti-depressants. Calling doctor this morning. I am sure the doctor will respect your decision--you care for your husband every day. Doctors are partners, not dictators, right? HUGS christina
Lisinipril is.....just using that as a reference to how different drugs affect people in different ways. Ambien? Made me quit breathing....couldn't figure out why hubby kicked me out of bed...wasn't breathing. Causes my sister to have horrible nightmares......so different drugs?????????????? mil is on anti-psychotic at night......increasing the dose has helped tremendously...she will now get up and go to bed, she is not mean and argumentative. She will not give me any grief over bathing and lets me change her and keep her bottom clean so there are no more decubs. I tried to explain to her that dementia is what is causing her to be forgetful, it's why she can no longer drive, etc. All I got was no I'm not, yes I can, argue, argue, argue all day long. She is still able to cook for herself but it's all microwave frozen dinners. I cook and take food to her and I see now she feeds it to the dog.....so I will sit with her while she eats from now on. I still have to make sure doggie has fresh water daily, I keep her humidifier filled, she can't do it. But she will argue and tell me she fills everything everyday.....ok appreciate that..I'll just add a little to it. I should take her to Wal-Mart, she needs new sheets for her bed, but it will be an exercise of TOTAL frustration and I'm not sure I'm up to that right now. Don't want to snap at her because she doesn't know how to shop anymore. And she has a hard time understanding the concept of computer shopping. Maybe that is something we can work on today. After I do the laundry and fold the clothes in the laundry basket and change her little butt. Love to all!!!!!!!!!!!!!
ddotal a good doctor will work with you....not against you, he will brain-storm with you. DO NOT abruptly stop taking anti-depressants.....wean off please!
Jam ~ My pets love drinking from 'serentity fountains'. I had a large one on the deck which attracted wildlife along with my tailed gang. Bought some indoor ones that live in various locations surrounded by houseplants. Might be a option for the mighty pug?
I am glad you're here! That extends to each of you!
Oh my, just got back from doing morning COL clean up.......doggie has peed all over bathroom cuz she just will not let him outside long enough to do his stuff...ok are we wet or dry? Wet I think.....ok let's go change. So we stand in the bathroom for a couple minutes before she asks what we are doing....we are going potty and changing. Food and other yuckies smeared all over the front of our robe, she wears one over her clothes all day, back side underneath is smeared with poop....oh goody. Didn't eat this morning, said she didn't feel like it......I can see physical changes, slower walking, hunched over, says she feels good and is not in pain. Even with dementia she put hot rollers in hair almost every day and put make-up on, lipstick for blush and all. Haven't seen that for several days. She needs her hair cut, mentioned getting her a manicure when we went for haircut and you would have thought I was asking her to cut her arms off!!!!! Anyone encountered that before? If I don't get off this computer I will never get a thing done today. Peaceful day to all!!!!
Miz -I think when spring gets here you will feel better-after the husband died I had such a busy summer with two weddings and a class reunion and visits to my Mom's and was very busy but it also was summer and I really think that helped and you will be different but stronger try to do something you enjoy each day-I had a real meltdown today trying to get some investment changed into my name -my son was able to help-you will have days when you can cope and other days things will seem too hard for you-let us help you during the bad times. I am so glad Ted was able to make contact with someone. Ambien can mess up a person it made me sleepwalk and eat lots of food during the night in the beginning.
Hey guys,I'M back.Meeting with paper went better than expected.I promised them a good story,so I'm working for free until they get one.Daughter says you sure are makin mayor look stupid,but as I explained I'm not makin anyone look stupid he's doing that on his own,I'm just pointing it out and asking sensible questions.One of the ordiances they have claims if you own a house in town you are allowed 2 people per bedroom.SAY WHAT? I Told the small paper they have first shot at story,before I share with the media my knowledge.Lady editor-lady publisher.One adjustment I'm making is lawyer,I'm hiring someone that is not their buddy.The one I have now is friends with their lawyer:( Got name of someone I feel will be perfect match for them. They have laid off of me right now,but I'm not waiting for next incedent to come out of blue.Thats why I raised the Confederate Battle flag-very symbolic gesture-plus its funny as hell.Daughter and I are playing movie crew-she's havin a blast,says this is as much fun as Disney World.
excellent Tennessee. Nothing beats the power of the moving image.
Jam, if you say white she will say black.
dd: what Jam sez: can't stop abruptly, must wean off. Use a calendar. If the doc won't work with you, get another one.
Linda! good instincts! kiss Pa for me.
Maxine!! good advice for Miz.
Christine: white/black It's a bitch, but that's what they do. forget, lie, hide stuff, etc etc.
Oh, and there's no teaching. she can't shop on the computer alone because what she will remember is how to give up a CC# and lose everything. Life as she knows it is over.
Ted! glad you're alive, pal.
For those of you starting the life with severe dementia: I would tell mom that all we had was this moment. This very moment and that we could have fun or we could be sad. i was with her all of the time and acted as a cruise director would. Now let's do this! or That!
Dementia patients by nature are very contrary. This is complicated by whatever relationship you had with them before they lost it and what kind of personality they had before. My mom was a nightmare and didn't smile at me for over 18 months. She was as paranoid as a junkie and knew that she was failing but worked very hard to mask it. She had odd behaviors that stemmed from dealing with her run down house and run down building (all fixed now; and I wonder why I'm so sick...) You will encounter all kinds of crap and all you need to do is remember: what do I expect? She's demented.
I really don't like to be so harsh, but it's necessary because as you all have probably witnessed, NO ONE wants to address what's coming. the quicker you get this under your belt the easier it will be to deal with it. And it's NOT easy. harbor no expectations of them learning to do something. It will only last for a matter of days. You just want them to be able to cope, hopefully have happy moments and not kill you.
One of the things I taught my mom early on in the disease was how to make coffee in a French Press. She added the flourish of tying a clean dish towel around it to act as a cozy. She was able to do it for exactly 3 weeks. One morning I walked in and she had all of the gear out but didn't know how to put it together anymore. I made an excuse and left the room and cried my heart out. Because I knew.
Yes, I'm with you Bobbie. I get it. I am constantly reminding my Mother that she is safe, she is loved, she is with family, she has caring and patient caregivers, etc. She comes back with negatives, or says she forgot. I understand. I don't expect any of it to be easy, and so far it hasn't been. I will never again mention,on this thread, anything from the past, as I realize I irritated a few people, and maybe some were worried I was going to ruin your Gross Vent site. Don't worry, I won't. I have appreciated being able to communicate with you and feel part of something positive. Thank you, again. Christina
What did you mention and who got irritated? Was it me? This is a Venting thread, and you VENT! I really don't care who agrees with whom, as long as everybody gets stuff off their chest and the person getting taken care of benefits! Past of what?
I think that what's very cool about this thread is that there are so many of us, it is impossible for one voice to 'ruin' it.
Now I'm all curious as to what was mentioned! If anybody knows, tell me. or maybe it wasn't that earth shattering OR I have the early onset! We love you christina and you have a good, funny voice and are beneficial to EVERYBODY!!
WooHoo: drama that's not mine!!!
ok somebody fess up: what was it....c'mon and tell me. Please let me know... I don't have TV.........
That is sweet of you, Bobbie. I am tired and over sensitive today, and my situation is not as serious as others, so I should not complain. I'm sorry--I feel like an interloper.
I'm tired and sensitive too! Plus I need a bath! AND my gangplank is broken and I've been stuck on the boat, but I just crawled over the side of this thing and put a temp fix on it so I can go and EAT. Kid, you emotions are going to go all kinds of ways and just like we tell the ones we care for that THEY are safe and sound; so are YOU on this thread. Everybody here has had a time when they felt like a guest in their own skin. I don't know how much of this thing you've read, but all kinds of stuff has happened and we are still here. Caregiver = Tired and Sensitive!
We're still here and you're still here and I need to wash and eat in that order and I think I will feel better with a good meal in me. That goes for everybody! If you're feeling punk, have a good dinner!! Don't let the posts fool you. I honestly don't know where I'm getting the sap to write this much. Or fix a gangplank. must be crazy hungry.
when a caregiver says: my situation is not as serious as others, give it a minute. Christina, it's serious and not time for you to be feeling like anything except the angel you are.
Thank you. I'm going to take a shower and have a salad because I feel fat today, too. If I had to do this alone, I would be drinking at 10 am, taking the drugs we took Mother off of, and who knows what else. Eating See's Candy. I am doing that already, too much. I don't know how any of you do it 24/7. You must be made of much stronger stuff than I am. Love, christina
Christina, We all have our moments of feeling guilty when we think we have it easier than someone else who is caregiving. But we also learn that everyone's limit to their own situation is different. We all cope differently and feel differently because we are all individuals. That's what makes this thread so great! It takes all of us to make the team we are, and be able to get through rough waters and help each other. As Bobbie has said, we've had some bad moments and will surly have more. But the one thing you can always count on, is understanding and support for your situation. It is hard to get a point across when typing words. You may read a sentence in a totally different tone from what the writer used. We all have bad days and sometimes it comes out in words we don't mean. Just hang in there. This IS the place to be for help and comfort! Got to make dinner, but I will be back later and talk to you about my Mom's meds and what works for her.
Hi this is the last post from my old computer. In 10 minutes I will switch it off and plug in the new one (which in fact is second hand, but it has a much bigger memory than the old one), and I hope that it works this time. I am sentimental and I am sorry for the PC I am going to abandon. I am going to give it to Daniela, my helper, who is going to ravage it with chats and Skype calls!!!!! Bye bye my old tower. I read all your posts in these days and: 1) Jam, I am sorry for your mother. You are being very brave. I tried to write you on Facebook and then I remembered you don't have a Facebook page. 2) One of you (Lil'Tenny?) mentioned the movie "It's wonderful life" (Frank Capra, James Stewart). It's one of my favorite movies and James Stewart was, and will always be, my favorite actor, I think I have seen 90% of his movies. He was the favorite actor of my father, too. The message of that movie is great: George takes care about people, and though, he is always full of troubles (and he will probably be full of troubles all his life) but when the BIG CRISIS arrives, there is a benevolent hand who helps him... and saves him from complete dysaster. We caregivers have chosen the difficult way, and our life will probably be more difficult than the life of those who chose the easiest way. But we must not lose the faith that "that" benevolent hand will always save us, sometimes at the last minute. 3) Linda said a very important thing (it does not surprise us that she is the caregiver of the year!) She reminded us that it's not us who determine when our parents will die. So, stop with the sense of guilt! My mother 2 months ago walked in the garden at 8 o'cl in the morning, without her coat on, with no shoes. She could have gotten a pneumonia and I would have always felt guilty as I had not watched her properly. She did not even catch a cold I have been lucky, very lucky.... "I" could have killed her because of my carelessness. But, again, it's not "me" who decides when she will have to die! Stop with the sense of guilt, everybody! 4) It took me several hours to read 300 posts (after two days of computer blackout) so I thought that when a person like the famous Amber Jane tells some nonsense, and we tell her to read all the posts of this thread, we are asking an impossible thing. Nobody would read 8000 posts. So I honestly don't think this is the good approach. We cannot think that a person who does not know us, understands our slang (we have become kind of a sorority, of brotherhood if you prefer), I think we should be more patient, we should take some time to explain our point of view, because we have lost not only Amber Jane, but also other people who maybe needed our help. This hurts me. I see that Bobbie steers the wheel and tries to recover the people who have been thrown overboard, but sometimes she does not manage to rescue them, because they feel rejected. What do you think of that?
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Does anyone have any advice? She also wet the bed last night at 1 am, which she doesn't usually do, and remarked, half asleep,"this happened once before"--which it did!!! Weird how she comes up with factual memories, but rest of the time she is imagining people, fear she will be left alone, thinks people are mad at her. She has been irritable all her life and a bit paranoid. I guess I should be happy she is not more miserable.
Anyway, if anyone reads this, I need some help. Maybe I should go to a different thread? Thank you.
christina28
Hi Christina, good luck with mom. I think effexor is a stimulating antidepressant, not sure though, hope the doctor can help. Some people like namenda and I have my mom on a low dose of Trazodone at night to help her sleep. That's all I know about that. Glad you'll be getting a break today.
I'll have a break tomorrow for a few hours, looking forward to it.
ssk
love,
miz
it's hard work doing all of what you are doing. your mom can and will see things, hear things and still floor you by remembering something exactly as it happened.
The disease is progressive so cherish that you have this much interaction because it will disappear.
As far as sundowning every 2 hours, I think that's the drug.
I had mom only on blood pressure med, Namenda and Aricept because most elderly people are WAY overmedicated.
It's actually kind of wierd to try and use psychotropics (Jam, right usage?) when you're dealing with dementia. I know that there are many schools of thought on this and my experiences with dementia are going to be different than others', but with what I have read on this site, I think that a lot of people would be better off without the psycho side affects because the disease itself is going to give you a host of symptoms and that's just the disease. you can't stop it or even slow it down by much.
For me and mom it was easier to know what was what without getting confused by a mood drug.
Mom's stomach would rumble when she was digesting her breakfast and she would get confused, think it was growling from hunger and accuse me of not feeding her. she couldn't tell that she had just eaten, nor could she feel 'full'.
She would ask for something, get it and then not want it.
Over and over and over.
That's like the nap time in the bed, etc.
i would get forceful with mom, not mad, just take no prisoners style and tell her, Look, you're safe and sound and let's nap right here and you have to trust me when i say that you'll just hate it in your room in the next 15 minutes.
mom and I also had the 'you have dementia' talk. I felt and still do that some folks need to know what the hey they are facing and why they're acting all crazy. Some dementias you can do that and some you can't.
With mom I could and it did make it easier because i would say: That's just that dementia making you do/say/act like that. it got to where I could define a behavior to her as part of the disease and I could see that it was way EASIER for her and therefore easier for me.
Even in the flurry of writing about being grossed out, I tried to create a safe environment of 'no shame' for my mom. I told her that there was nothing that she would/could do that would make me not want to be with her and help her.
At this point I would like to address something:
For those of you who haven't quite wrapped your heads around the fact that the person you are taking care of is going to get much much worse, please listen.
If your parent lives alone and they are wearing diapers, YES the diapers will be dirty when you show up. If your parent is walking around in dirty diapers, they should not be living alone.
They are not trying to be gross, it's the disease.
If they cannot feed themselves or throw away what you make them so they are not eating, they should not be left alone to feed themselves because they can't. It's the disease.
Someone in a good humor has to sit there and make sure the food goes in.
Someone with a good humor has to make sure that their ass is clean and shiny all day every day, not once in awhile.
If someone is suffering with Dementia, there comes a time when you have to take on that care 24/7 or make other arrangements. They can't be next door, upstairs or across town. It won't work and it's grossly unfair to them. They're sick.
Even with my mom and the fact that we had a rocky time when I was growing up and beyond, I wanted her to always feel safe.
This is way more terrifying to them than it is to us. Another reason I don't like psychopharmecuticals because you don't know where you are in relationship to the reality of this progressive disease.
That's it, I am done.
Still don't feel good, but wanted Christina to hear from someone who has completed this journey.
lovbob
miz----you and I are in that same BOAT right now with our recent loss, it hurts and will for a while, but we WILL go on. You cannot question yourself----will it change the end result? No----God was ready for mommas and anything we might have done or thought would not have made a difference. Sure I could have left my mom in the hospital being sedated around the clock and she would have died the same day, at the same time but in pain. I chose to make her last hours as pain-free as possible and now I realize how much better that was for her and ultimately myself. Over the past 25 yrs in EMS there were so many times that I would sit after a call, while writing my report, and think well maybe if I had done this, or maybe I should have tried this, or if I had done this would they be alive. I drove myself crazy! Only God has the ultimate decision on when and how. If we all sat around and worried about the "what if's" we would never get anywhere. Concentrate now on the wonderful memories, the happy times. My hubby said something to me the other day that really got me thinking.....he said if I was truthful with myself I would realize that part of the reason why I feel so sad is because I am "the next generation". Well dear you are so right...............so now I am going to concentrate on my life and what I can still make it. I am going to make sure the COL is taken care of so I will never ask "what if". And when her time comes I will make sure she goes to the light peaceful and as pain-free as possible. Do you scrapbook? That helps me a lot, right now I am working on my family heritage, grandparents, parents, etc. and the pics and journaling takes my mind to pleasant places. Hugz!!!!!
So, it's OK to tell her she has dementia? Guess I am so used to dealing with her denial of most everything her entire life, I hate to put be the one to burst a last bubble, but it is the truth, and I have always been the one in the family to deal on that level.
Thank you for taking the time when you are "under the weather", Captain. Thanks to all of you.
Hey, Sorry I've gone silent.
My interent went out and its gonna have to stay out for a while.
Please send my love to everyone. I'll check in now and then but I won't be able to be in constant touch
Thanks for caring, Ted.
my dad doesnt need any of meds for dementia or alz , he still has his mind ,
he used to take a hand full of pills and i ve weedin em down to 4 a day , 4 at night , i let the dr know about it too . i wanted to get him off one for antidpression dr said ah better keep him on it . sometimes i give to him and sometimes i feel nah dont give it to him , those pills scares me . i do believe its killin our parents , bp pills heart meds prostate pills are in neded so he sticks with it .
those dr is just using our elders as a rat lab , try this see if it works , try that see if it works . blah blah . when u get the errie feeling , nagging feeling , listen to it . xoxo
My pets love drinking from 'serentity fountains'. I had a large one on the deck which attracted wildlife along with my tailed gang.
Bought some indoor ones that live in various locations surrounded by houseplants. Might be a option for the mighty pug?
I am glad you're here!
That extends to each of you!
Nothing beats the power of the moving image.
Jam, if you say white she will say black.
dd: what Jam sez: can't stop abruptly, must wean off. Use a calendar. If the doc won't work with you, get another one.
Linda! good instincts! kiss Pa for me.
Maxine!! good advice for Miz.
Christine: white/black It's a bitch, but that's what they do.
forget, lie, hide stuff, etc etc.
Oh, and there's no teaching. she can't shop on the computer alone because what she will remember is how to give up a CC# and lose everything. Life as she knows it is over.
Ted! glad you're alive, pal.
For those of you starting the life with severe dementia:
I would tell mom that all we had was this moment. This very moment and that we could have fun or we could be sad. i was with her all of the time and acted as a cruise director would. Now let's do this! or That!
Dementia patients by nature are very contrary. This is complicated by whatever relationship you had with them before they lost it and what kind of personality they had before.
My mom was a nightmare and didn't smile at me for over 18 months.
She was as paranoid as a junkie and knew that she was failing but worked very hard to mask it.
She had odd behaviors that stemmed from dealing with her run down house and run down building (all fixed now; and I wonder why I'm so sick...)
You will encounter all kinds of crap and all you need to do is remember:
what do I expect? She's demented.
I really don't like to be so harsh, but it's necessary because as you all have probably witnessed, NO ONE wants to address what's coming. the quicker you get this under your belt the easier it will be to deal with it. And it's NOT easy.
harbor no expectations of them learning to do something. It will only last for a matter of days. You just want them to be able to cope, hopefully have happy moments and not kill you.
One of the things I taught my mom early on in the disease was how to make coffee in a French Press. She added the flourish of tying a clean dish towel around it to act as a cozy. She was able to do it for exactly 3 weeks. One morning I walked in and she had all of the gear out but didn't know how to put it together anymore. I made an excuse and left the room and cried my heart out. Because I knew.
lovbob
I have appreciated being able to communicate with you and feel part of something positive. Thank you, again. Christina
What did you mention and who got irritated? Was it me?
This is a Venting thread, and you VENT! I really don't care who agrees with whom, as long as everybody gets stuff off their chest and the person getting taken care of benefits!
Past of what?
I think that what's very cool about this thread is that there are so many of us, it is impossible for one voice to 'ruin' it.
Now I'm all curious as to what was mentioned!
If anybody knows, tell me. or maybe it wasn't that earth shattering OR I have the early onset!
We love you christina and you have a good, funny voice and are beneficial to EVERYBODY!!
WooHoo: drama that's not mine!!!
ok somebody fess up: what was it....c'mon and tell me.
Please let me know...
I don't have TV.........
lol
lovbob
I'm tired and sensitive too! Plus I need a bath!
AND my gangplank is broken and I've been stuck on the boat, but I just crawled over the side of this thing and put a temp fix on it so I can go and EAT.
Kid, you emotions are going to go all kinds of ways and just like we tell the ones we care for that THEY are safe and sound; so are YOU on this thread.
Everybody here has had a time when they felt like a guest in their own skin.
I don't know how much of this thing you've read, but all kinds of stuff has happened and we are still here.
Caregiver = Tired and Sensitive!
We're still here and you're still here and I need to wash and eat in that order and I think I will feel better with a good meal in me.
That goes for everybody! If you're feeling punk, have a good dinner!!
Don't let the posts fool you. I honestly don't know where I'm getting the sap to write this much.
Or fix a gangplank. must be crazy hungry.
lovbob
when a caregiver says: my situation is not as serious as others, give it a minute.
Christina, it's serious and not time for you to be feeling like anything except the angel you are.
ok.
Food.
I'll check in later.
lovbob
Got to make dinner, but I will be back later and talk to you about my Mom's meds and what works for her.
I am sentimental and I am sorry for the PC I am going to abandon. I am going to give it to Daniela, my helper, who is going to ravage it with chats and Skype calls!!!!!
Bye bye my old tower.
I read all your posts in these days and:
1) Jam, I am sorry for your mother. You are being very brave. I tried to write you on Facebook and then I remembered you don't have a Facebook page.
2) One of you (Lil'Tenny?) mentioned the movie "It's wonderful life" (Frank Capra, James Stewart). It's one of my favorite movies and James Stewart was, and will always be, my favorite actor, I think I have seen 90% of his movies. He was the favorite actor of my father, too.
The message of that movie is great: George takes care about people, and though, he is always full of troubles (and he will probably be full of troubles all his life) but when the BIG CRISIS arrives, there is a benevolent hand who helps him... and saves him from complete dysaster. We caregivers have chosen the difficult way, and our life will probably be more difficult than the life of those who chose the easiest way. But we must not lose the faith that "that" benevolent hand will always save us, sometimes at the last minute.
3) Linda said a very important thing (it does not surprise us that she is the caregiver of the year!) She reminded us that it's not us who determine when our parents will die. So, stop with the sense of guilt! My mother 2 months ago walked in the garden at 8 o'cl in the morning, without her coat on, with no shoes. She could have gotten a pneumonia and I would have always felt guilty as I had not watched her properly. She did not even catch a cold I have been lucky, very lucky.... "I" could have killed her because of my carelessness. But, again, it's not "me" who decides when she will have to die!
Stop with the sense of guilt, everybody!
4) It took me several hours to read 300 posts (after two days of computer blackout) so I thought that when a person like the famous Amber Jane tells some nonsense, and we tell her to read all the posts of this thread, we are asking an impossible thing. Nobody would read 8000 posts. So I honestly don't think this is the good approach. We cannot think that a person who does not know us, understands our slang (we have become kind of a sorority, of brotherhood if you prefer), I think we should be more patient, we should take some time to explain our point of view, because we have lost not only Amber Jane, but also other people who maybe needed our help. This hurts me. I see that Bobbie steers the wheel and tries to recover the people who have been thrown overboard, but sometimes she does not manage to rescue them, because they feel rejected.
What do you think of that?