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Originally posted by: DLMifm
quote: Originally posted by MimiR:
He was only in the Reserves so I don't think we will qualify for Aide and Attendant,
He must have discharge paperwork. The key is if he served in active duty in time of war. Many reservist had periods of active duty.
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Originally posted by: DLMifm
quote: Originally posted by Ben's wife: Hi everyone - It's been a while since I've checked the blogs, but today has been a bad one, and I guess it's true, misery loves company! My husband is still able to be up and around, but driving me crazy today. Keeps going down to the basement & unplugging the dehumidifier - often times ends up disconnecting the refrigerator as well. <><><> Check out plug covers on http://dandyfunk4.blogspot.com/ There may be ways to lock the cord/plus so they don't unplug easily <><><> Right now I don't even want to be in the same room with him. I know he doesn't know what he's doing, and I hate myself for yelling at him, but I have to repeat things over and over & then over again, all the while knowing that it won't stay in the mind for 2 minutes. <><><> SAVE YOUR BREATH his brain has been damaged by Alzheimer's yelling is counter productive, see alzheimer's compendium (JAB's blog) for in formation and advice <><><> Last night he said he was going to bed, then kept hanging around - he finally told me he didn't know where the bed was. We moved here into a very small house after he was diagnosed, so small I don't know how he could get lost. <><><> He has Alzheimer's, getting lost at any time any place is to be anticipated. On again off again in moments. <><><> We have an appt. with VA next week, and I have started him in daycare once a week, just to preserve what little sanity I have left.
It is difficult for us to accept LO's mind is damaged by Alzheimer's Disease and there is no reset button.
Take care of yourself! Get Psych help .
DLM
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Originally posted by: MimiR
[QUOTE]Originally posted by flowerlady:
Mimi..I feel like you are living in my side pocket.
You are so right. I don't want to feel like we are roomates, but it sure is hard not to. Thanks for responding and I will keep you in my prayers. You hang in there too.
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Originally posted by: flowerlady
Mimi.... our spouses sound like they may be at the same stage. I wanted to post that in our town we have a VA rep and she just knows all kinds of things and is good to talk to someone in person. My husband was not in wartime but did after a year or more get a small pension. It was turned down but then here it comes and they do pay retro. They don't always offer up information so you have to really get in there and find things out...So who knows with those people. They put everything in a letter. We sit and wait for the letters for appointment or anything to do with them. Good luck..love flowerlady p.s. waiting for some cooler weather!!!
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Originally posted by: Ben's wife
Hi everyone - It's been a while since I've checked the blogs, but today has been a bad one, and I guess it's true, misery loves company! My husband is still able to be up and around, but driving me crazy today. Keeps going down to the basement & unplugging the dehumidifier - often times ends up disconnecting the refrigerator as well. Right now I don't even want to be in the same room with him. I know he doesn't know what he's doing, and I hate myself for yelling at him, but I have to repeat things over and over & then over again, all the while knowing that it won't stay in the mind for 2 minutes. Last night he said he was going to bed, then kept hanging around - he finally told me he didn't know where the bed was. We moved here into a very small house after he was diagnosed, so small I don't know how he could get lost.
We have an appt. with VA next week, and I have started him in daycare once a week, just to preserve what little sanity I have left.
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Originally posted by: MimiR
Jab, Thank you for your response. He isn't ready for Adult Day Care yet. He is still safe at home and is better before the sun goes down. He was only in the Reserves so I don't think we will qualify for Aide and Attendant, but I will double check.
Thank you for the articles/sites. I will definatly investigate them.
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Originally posted by: meeko11
I was on a telephone town hall last evening. the subject was AD and the main response from callers was the need for in home help.
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Originally posted by: Cathy J. M.
quote: Originally posted by MimiR:
How's it going, flowerlady? Today is a hurting day for me. I miss having an emotional partner who could support me. I'm tired of always having to be the "strong one".
Can I get an "Amen" from anyone on that?
Amen, Mimi! None of us can always be strong. Hope that MANY friends plus a special partner find you soon! I know they're on the way, looking for you.
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Originally posted by: flowerlady
Hi, Yesterday was rough. DH has me worn out for sure and now the money situation is going out the window with government situations. Crap. I had to drive for DH. For the first time he could not go to the only place he could drive to. I am not getting a thing done, it's doing for him or with him all the time. He told me that he figures this is as bad as he is going to get so unfortunately I had to fill him in on how this goes. I don't know but that talk Imade me feel better
and I needed for him to know that I am going through some crap too. I don't want my frustrations to make me be short with him but I am on the edge many times in the duration of a day. Last night was a new one. He comes to bed at 3 am and turns on the lights and the ceiling fan and then goes upstairs to the spare bedrooms instead of coming to bed. I was tired and I know it is a small thing but had to get up and turn things off etc. Just so many small things just add up. I would like to get to sleep just once and be able to sleep 8 hours in a row. So am tired and bitchy and just feels so good to vent.I am going to get a companion or something. He is not happy with that but I have to have some moments where I can breathe and not have to worry about him etc. I talk to friends and they are retired and enjoying trips and grandkids etc. all sounds like so much fun but not close to my life. Their lives played out as they planned. Not happening here. Am not relating to that anymore. I don't anyone is too interested in my everyday life anymore. Am going to get my hair cut today and is going to be a much needed treat!!!
Take care all of you and have a good weekend and I will too. yada yada yada Much love the flowerlady.
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Originally posted by: MimiR
How's it going, flowerlady? Today is a hurting day for me. I miss having an emotional partner who could support me. I'm tired of always having to be the "strong one".
Can I get an "Amen" from anyone on that?
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Originally posted by: flowerlady
I hear ya MimiR and hi everyone..it is just something else this memory crap and we just have to stand together and get each one of us on here through these days and nights. Other caregivers are the only ones who have the full scope of what living like this is. My god at times the days seem to last forever. I am losing interest in most things it seems. Taking some Prozac for 4 months and only makes me tired so think that idea is a bust.... Food is the order of the day. He is always wanting food and I am so over doing any cooking and trying to please. Oh well...I got my Ambien filled today and hopefully will sleep tonight and will be in a more productive and less bitchy mood tomorrow. Some days I just pray for nightfall so I can crawl in and shut the door. I am hoping he will go upstairs and let me at least have the bed and the night....I feel like such a bitch even if I don't say anything because I know what I am thinking. I see that I got some papers from the VA and it looks like there is some assistance. I will scan or something so all can read. I don't think the Vet had to be in wartime with it unless I read it wrong. ALSO.. am sure all are watching their investments. I thought well I could maybe make out o.k. and now much is in the toilet, we as caretakers sure did not need that hit to put the cherry on top of the sundae..what else??? Stress is stress as far as I am concerned. I am rambling but just typing as it comes so bear with. I think I may be hitting some level of bottom. I know I cannot keep up with the stresses. I am thinking a health kick may serve a double purpose but need to get myself up to that point. Just a thought. Well must go DH is just talking away non-stop, is a miracle that I can concentrate to even type this much. I wonder why people with AD just cannot shut up save their souls. I hope that it is a phase. Is getting to be a long one!!!!!!! Now he also reads everything out loud to me to boot. Well guys thanks for your ear and for so you unselfishly listening to my rambling bitch and so on. Take care and try to have a good night. Only 19 more days and my son will take his Dad to Seattle for 10 days..Will be like heaven on earth for me. I usually sleep non-stop for a day or two. last year I went to visit relatives at their request...My advice. take that time ALONE however you can get it...this year no relative I am not lonely...but tired and will be more than happy to have the peace and quiet and my house to myself. P.S. the companion issue is not going over well. DH is concerned that I am taking over too much of every area of our lives etc. money, decisions etc.it agitates him. Like after 40 years of marriage I am going to rob him blind and take off with a Fabio look alike...LOL bigtime. My brain is tired. Love you guys.. BTW are any of you from Michigan? I am in the Woods!!! 
later...much love the flowerlady
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Originally posted by: DLMifm
AMEN !! AMEN
Your cyberspace partners want to support you. Just ask.
FlowerLady:
Please update us on how goes it the VA and DayCare?
quote: Originally posted by MimiR:
How's it going, flowerlady? Today is a hurting day for me. I miss having an emotional partner who could support me. I'm tired of always having to be the "strong one".
Can I get an "Amen" from anyone on that?
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Originally posted by: flowerlady
cacoon... hello mine is doing that too only if I go along and or agree at times he is on to me and that does not sit well. I guess just have to play everything by ear. I don't know about you but my DH changes all the time sometimes minute to minute. Well one good thing is at least us caregivers will never get lost. love flowerlady
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Originally posted by: flowerlady
Another subject here. As I type my DH is ranting again. The money stuff is getting him real worked up. He has no idea of what has happened with the markets but somehow remembers every financial deal or job I ever was involved in. So somehow it is my fault that we lost money. Now is the may as well get a divorce too as I do not do one thing for him and never had. He does not remember me working or anything like that. I know it's just the disease but it still hurts. Next we will move unto the sex deal which is my fault. Most things are these days. Just need to get some support today. Agitation is the word for today so looks like a rocky one. much love flowerlady
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Originally posted by: cacoon
MimiR, Amen! and Amen again.
Re your earlier post re "I write notes for him but he never reads them."
I too write notes for my LO and he DOES read them, but he doesn't understand what they mean. So when I come back into the room, he might say, "Did you have a good day at work?" when actually I've just been outside for a few minutes.
Drives me nuts and I swallow it. I say to him, "Yeah, honey, thanks... I had great day at work."
But oh how I want real conversation.
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Originally posted by: Payshensh
Hi everyone. I am a companion/caregiver to my girlfriend's mother. My days are long. I typically arise at 5:00 AM and am home by 6:30, sometimes later if I stop and do an errand or two.
My lady is 83 in mid-stage Alz. She requires 24/7 care. She needs to be watched constantly. Some days are good, okay and others are not so great.
Last week she wandered and I was lucky to find her across the street sitting on a bench in 95 degree weather wearing a long sleeved denim jacket. She crossed a busy road two lanes of traffic one way and two lanes the opposite direction. I was frantic. If anything would have happened to her I don't know how I could live with myself.
The same week she insisted on going "out" and I was literally trying to tug her (I linked my arm in hers) and persuade her to return to her apartment. Beforehand I could tell she was cranky and she accused me of pushing her and raised her fist to me inches from my face and said she was going to bam me in the face glasses or no glasses. She moved her arm toward my face.
She has been abusive to me fairly often. She is on an anti-psychotic med.
To 24/7 caregivers I don't know how you do it. The same is said to me by her daughter, my very good friend who is married, works and visits with her mom on the weekends. Her two sisters do not come very often anymore. One used to visit Mom once a month traveling a long distance; the other daughter also lives a long distance away. Her youngest daughter, my friend bears all of the responsibility and the stress.
All I can say is I relate to everything you all say. The repetitive actions alone are enough to drive ya nuts just observing them. The nonsensical things that are done.
I cook daily, clean once a week and help with the showering (which is an act of persuasion as she doesn't want to do it). I dry her hair and style it. She can get dressed by herself.
Some days, hey most days everything she does is annoying to me. Most mornings start off with "What's on the agenda for today?" A couple of weeks ago we left early and I drove to a place only to get there and she doesn't want to get out of the car (I finally convinced her to) and she did but it was a quick trip and I would have liked to stay longer. Pretty grounds, benches, fountains, peaceful place and it was a beautiful day. On the way home she gets anxious and says she has to be home soon as her husband will be home and expecting lunch. Her husband has been dead 5 years.
This woman had 2 husbands and 3 daughters. Husband no. 2 left her well off and her daughter wants to keep her at home as long as possible. She lives in her own apt but administration has said that is possible but only with 24/7 care.
She wakes up in the middle of the night and wants to go home, packs clothing to go home...
and on and on...
She works my nerves. It is exhausting taking care of someone with alz/dementia. It is frustrating. Very little about it is rewarding if anything.
In my worst moments I think they all should be put in a straitjacket and locked in a cell and the key thrown away.
At my best I can't do enough for her.
My sympathy to the lady whose husband can't shut up. This lady only talks when you speak to her, offers up nothing in the way of conversation. Ask a question and you get a one/two words answer. She usually says thank you but when agitated this slips her mind.
I have often thought yes they can control their agitation/the nastiness and behave.
It's like taking care of a two year old.
Thank God she can dress herself. I had a hard time lifting her out of the bathtub the other week. I outweigh her by about 15/20 lbs but it's like dead weight. She usually showers.
Challenges, challenges, boredom, boredom.
Today I'm having a relatively "easy" day. The afternoon and into the evening she worsens.
Tylenol P.M. is a Godsend. I used to think I had the harder job during the day but now the night person has the challenge of sleeping lightly so that she doesn't wander off into the night.
She can be belligerant and then sometimes nice.
Here she goes getting up and into the kitchen so I need to eyeball her.
Later and bless you all.
Helen
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Originally posted by: Cathy J. M.
quote: Originally posted by Payshensh:
Tylenol P.M. is a Godsend.
I hope it's you, and not the person with Alzheimer's who's being given Tylenol P.M.! It contains benadryl, and will make her thinking, memory and agitation worse. There are other ways to facilitate sleep that don't make her worse.
It would be helpful for you and this woman's daughter to go to an Alzheimer's support group. I think it's a great idea, too, to read the same books on Alzheimer's caregiving so you can discuss them. Many people here favor a small book called "Moments of Joy." I like "Learning to Speak Alzheimer's" very much, and "The Alzheimer's Action Plan" is also very good.
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Originally posted by: Payshensh
Thank you Cathy. I did not know that Tylenol PM contains benadryl and that it can worsen Alz symptoms. I will mention this to my friend. Her sister recommended it to her. I read the label and will read it again. Maybe the melatonin. Otherwise she gets up during the night more than once and then is exhausted when morning arrives and then wants to sleep and the cycle is repeated.
Her attention span is very limited and she has no interests. She loves to sit outside. Two years ago she used to read the newspaper.
I've read books and have gone online to learn what I can about this disease. I have "The 36 Hour Day", "Speaking Alzheimers", one other book and a small pocket book.
She is easily agitated. Got agitated at me this morning and said unkind things. The quicker I can brush this off or use humor to deflect things, walk away into the next room busy myself the better off I am and so is she. She won't remember the incident.
She does not share and it is not easy or fun to sit across the table and enjoy a meal with someone who says nothing. She likes to play with her food -- drivez me nutz.
I find the less I correct the better and less frustrated I get. It is not my place really; I just try to steer her in another direction, a distraction and I talk. I'm no gift gabber but I like to chat with someone who gives and takes part in it. I also do not feel that I need to entertain my lady.
She has lots of confusion.
It is heartbreaking to watch her sometimes but I find some days I need to detach as much as possible in order to get through a very long day, 12 hours.
just my thoughts and enjoying this forum...
Bless you all,
P
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Originally posted by: flowerlady
Payshensh...OMG I just laughed so hard at part of your post as you hit it on the head but I like your way of putting things. You know my hubby ALWAYS asks me as soon as I crack an eye open..WHAT'S ON THE AGENDA!!! Not sure he know what an agenda is or if we ever had one for sure. All patients must say that alot. You know and they should know that not much is on that big agenda. If I did have an agenda it would be sleep related. So that somehow tickled me as I hear that so much, is like clockwork. I talked to a fellow yesterday and he cared for his brother for 5 years. I had to ask him about this constant talking and singing etc. etc. He said his brother did not talk the last couple of years. I thought and this is mean...you know that sound kind of like a good thing. I am thankful that I do not have to do bathing and watching for wandering etc. that is on a whole new level. I support you and we are all here. Writing helps alot. Hope to read more posts later. love flowerlady
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Originally posted by: DLMifm
The next thing to attending a group is having the daily posting of all the participants on Caregivers forum sent to you by daily email. I used the Notify button at the top of the page and have the software send me a daily digest by email. I then scroll down the digest and scan the discussions. It is a quick and easy sampling of carer concerns as well a being very educational.
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Originally posted by: Starling
About notes, notebooks, calendars, etc.
This stuff works in the early stages and can keep them independent for a very long time. Use notes, notebooks, calendars, white boards in stage 4 and most of stage 5.
But late in stage 5 they all fail. In my husband's case he was copying the date from his newspaper into a notebook every day. There came a point when that is all that went into the notebook, but he could sign his name almost into stage 6 as a result. Which was useful at times. And then he didn't remember one or two days a week, and then it just stopped totally.
He was able to "read" those newspapers for quite a long time as well. And then he just didn't care anymore. We went from 5 newspapers a day, to just the one that got delivered, to not looking outside for that one either so I had delivery stopped.
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Originally posted by: Payshensh
Cathy,
My friend has been to a support group. I have not attended a live support group but I am sure it would do me good -- just a little difficult to factor it into my long day. So I read and have just joined this forum. In my free time I catch up on me time, taking care of my animals and my home and resting, going to church, enjoying my friends. Before I know it I'm off and running to care for my friend.
I am blessed that I have this time to offer to my friend and her mom. I lost my mom at age 46 (I was 19) and I haven't had an easy life and I am not in perfect health. I do the best I can.
I try to sort out my emotions. A caregiver's life is not easy. It is depressing at times. I wonder where the joy is in our patients. It is difficult to see. That they have lost touch with reality. I know they are lucid at times. And it is a joy and sunshine when they smile naturally.
Thank you and bless you all,
P
P
age 58
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Originally posted by: Cathy J. M.
quote: Originally posted by Payshensh:
I also do not feel that I need to entertain my lady.
P
There are activities for each level of Alheimer's, even for someone who's very confused. It may well help your client stay calmer and happier if you do engage her in some activities that she enjoys. It takes time to find the ones that fit -- that give her pleasure and satisfaction. They can't be too easy or too difficult.
Often someone can do an activity as long as the caregiver helps get it started and then gives some tactful clues. I used to play Kings in the Corner, a card game, with my partner and teach her how to do it every evening -- and give her clues during the game so she could win. (It can be very interesting, by the way, to figure out how to let the other person win most games without their realizing you're doing it -- more challenging, often, than winning the game yourself!)
There are lists of suggested activities online, plus lots of books.
Assuming that you're being paid something to do this job, I think it's a good idea to use some of your spare time to study the skills involved. It's not a "walk off the street and do it" kind of job, really. There's always more to learn, and that helps keep the job from being depressing.
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Originally posted by: Payshensh
 flower, glad I was able to give you chuckle...
P
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Originally posted by: flowerlady
A BIG AMEN ON HERE FOR EVERYONE. Hope no one has pulled any hair out today. I have been doing way too much eating therapy but need to stop that. I am at the point where I am getting stronger in being able to put some of his crap just go over my head. If a caregiver were to take all those mean comments etc. to heart we surely would be nuts. Not saying I have any big handle on anything but am trying or it will get me! I feel constantly attacked and belittled. I was a perky gal at one time. If my DH was not ill I would have not taken any of the crap I do now. I wonder at times why we have to ignore or laugh it off. It builds up ya know. What do you do. I could surely use some pointers. I already am determined to get out of the house more...he will probably have a fit...oh well. am just trying and trying again. Thanks for the ear. I hope that you all have had a decent day and got to do something for yourself and not just give care to someone else. love ya...flowerlady
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Originally posted by: jan9231
quote: gallon
I'm in MI. Oakland County. Wish we were closer.
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Originally posted by: JAB
Hey, congratulations, flowerlady! Big steps forward!
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Originally posted by: flowerlady
Just popped in to say hello on this thread. Yesterday I finally got over a big hurdle. I now have my husbands power of attorney so I am in control of MY future in a way. It was scarey and stressful with him at the helm of some things. Also got brave and contacted Sr. Ctr. There is a shortage of Companions. Only one available. but.... will keep at that. Need to save my sanity and am finally....finally getting some of my life to be mine and not all his. Sounds mean but got to do it. Beautiful day. take care all...love flowerlady
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Originally posted by: jan9231
Hi I live in MI. Oakland County. Wish we were closer. I'll keep you in my prayers - the group of care takers.
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Originally posted by: flowerlady
JAN, I'm up here in SchoolCraft Co.top of the lake. Will keep writing.
today hubby wondered if and how his siblings died and when. It surely makes on wonder how in the world does this disease go. At times thing hit almost a tone of normal but that never lasts long enough does it. I am so grateful for this site as I think no one wants to hear about any AD stuff because it goes on forever. I am taking some good advice from the posts or maybe it was something JAB pointed out. My husband can only drive 2 places and not get lost. I am stepping up and driving him. A few weeks ago he would not have gone for that. Things escalated quick there. With big snows this winter will not permit him to drive and he will not want to so by Spring. No more driving for him. I wanted to ask a question. Our nurse asked me if I had set myself a timeline with all this. What exactly am I to do, decide when he is too much at home or what??? Maybe someone has some insight as that confused me. Am under the weather today, think gallbladder...oh bliss. later dear friends..flowerlady
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Originally posted by: Starling
I think what the nurse was talking about is what I've called lines in the sand. For me violence of any kind was a line in the sand. Turned out that if I could not keep him safe was also a line in the sand.
I placed my husband the day after he took off in 100 degree weather without shoes to "go home." He had no intention of coming back. It took several experienced neighbors (one with geriatric nursing experience)and two very large state police to get him back in the house. And a call to the AA hotline to find out what to do next. The caseworker on the phone was afraid for my safety when I told her what had happened, but I knew that at that point I was still safe.
He went to the hospital the next morning, and to the nursing home three days later because the ER nurse (and doctor) decided neither he nor I was safe with him at home.
So lines in the sand. I could take care of him as long as both of us were safe, but not if we weren't. How much physical care can you manage? When do you need to bring in in-home help? How much in-home help? When do you call in hospice? When do you call the local Aging Agency? How about day care? Which one? At what point?
Lines in the sand. This far and no further. If x happens, I need to do y.
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Originally posted by: CarolynMB
quote: Originally posted by fluffy:
I am usually on Caregiver forum but have found that o be less than what I want. I get the feeling that they are so into caregiving that if you don't feel the same way your ignored.
Yes, I will say I'm looking foir sympathy, someone who understands.
I have had it. Lately it's all I can do to get through the day. Husband will not shut up. His mouth goes constantly. Talking to himself or calling me every 2 min. It's Ma, Ma, Ma. Oh yes, he knows my name because if Ma doesn't work then he calls me by name. Lately I have been ignoring him as much as I can but to hear him calling is so annoying it's bringing me to want to run out of the house and not come back.
Every two minutes he's asking what to do. Sorry I'm not an entertainer. I'm not anything anymore. Just a slave for husband. He has not patience. Wants what he wants when he wants it. Has no sympathy if you have an injury(have badly pulled ligament in knee). But he was always this way. The lord and master. I was treated more like a subject than a wife. I will state that husband is 94 snd I'm 64. Have been married 38 yrs. In many ways wish I had stayed single, for what I have gone through. Now I have to take care of him. Don't think he would do it for me. He wouldn't know how or what to do.
I did have him going 2 days a week to daycare, but got UTI and I havn't sent him back. I had to have someione come in to get him ready in the morning. Too much for me when average time I get to bed is 3-4 A.M. He stays up late. The last HHA here, I was missing $380 out of my pocketbook. I left it in dining room by mistake.
I'm told to place him. But since his pensin is $200 over what the state allows you for income every is private pay. I wrote quite awhile ago about investment we were talked into. At thaat time I wasn't up on all this stuff, husdband never discussed finances with me. Were allowed to take money out once a year at 90%.But rules changed and penakty now is 40%. That would cost us over $200,000. Only other thing I have is the investment my inheritance is in from Mother and Aunt. But why should I spend that. Income from that will help me when husband no longer here. To get HHA for whole day would be an avg. of $300 day. Might as well put him in ALF for $7,000-$8,000 month. Nursing homes are around $10,000 mionth for a half decent one. We oinly have enough on hand to pay for about 6 mos. without going into my inheritance. So what's thr sense. I have lived in this house all my life and when it came to me I never put husbands name on it so they can't touch that.Elder care lawyer I went to wasn't that much help. He more or less said since almost everything in my name now, why worry. Have to look for new one.
I have lost interest in everything and am so overwhelmed right now I don't know what to do next. I'd just like to run away.
Is my first time on here so am very new. I can feel your feeling of being overwhelmed. My husband was disagosed 2 yrs ago with dementia and i figure that he is in the 4th stage. I just wanted you to know that i care how you are feeling as at times i just want to run away. Take care of your self and know that God is there for you. In Christs Love
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Originally posted by: Contrary Mary
Flowerlady pls advise hoe do I get power of attorney. I am so new to all this and keep putting off thinking too far ahead but I know this is something I will need eventually. thanks for any info.quote: Originally posted by flowerlady:
Just popped in to say hello on this thread. Yesterday I finally got over a big hurdle. I now have my husbands power of attorney so I am in control of MY future in a way. It was scarey and stressful with him at the helm of some things. Also got brave and contacted Sr. Ctr. There is a shortage of Companions. Only one available. but.... will keep at that. Need to save my sanity and am finally....finally getting some of my life to be mine and not all his. Sounds mean but got to do it. Beautiful day. take care all...love flowerlady
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Originally posted by: Cathy J. M.
quote: Originally posted by flowerlady:
Our nurse asked me if I had set myself a timeline with all this. What exactly am I to do, decide when he is too much at home or what??? Maybe someone has some insight as that confused me.
A geriatric care manager asked me something like that early on, too. I don't understand it either. I can see using some average estimates of stages to get SOME slight idea of what might happen in the future, when -- but everyone is so different that I don't spend much time on it. Also, I used to think that by stage 6 or so, I'd HAVE to place my partner. Now I realize that it may be possible to keep her at home throughout; I'm just playing it by ear.
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Originally posted by: lurk
Flowerlady, I think you should ask the nurse what she is talking about or you'll never really know. And why is that important to her?
I read an article in the doctor's office today about an interview with Michael J. Fox. He said that in acting they have a saying, "Never play the result."
He said (and this is poorly paraphrased) that with Parkinsons, he knows what the result will be, but he acts as though he is still in the middle of the play and doesn't know the ending.
He said that it was like being in the middle of a busy street with his feet stuck in cement. He knows that a bus will come along and hit him at some point, but in the meantime, he will act as though he doesn't know that will happen.
I loved that with respect to my DD's MS and to our AD caregiving.
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