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    Old 12-23-2009, 04:17 AM   #76
    kenbob71
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    Re: My Parents are Lost

    Jojo.

    Good for you on the letter to your sister. Honestly, most people who don't "have" to deal with it, don't want to get too involved. Insist that your sister come for a few days while you go for a short vacation. I guarantee after a few days on her own, she WILL understand and support you.

    You need to have her scheduled to come on regular intervals to give you some relief whether she wants to or not. If it's planned out, she can reschedule her life to accommodate for it. This should not be your sole responsibility just because it is more convenient for her.

    You are already worn out. Depressed. And strung out. You have to take care of yourself in order to take care of others. I know that's easier said than done.

    Ask your Dr. for something for your depression. It really does help. I took it up till about 6 months ago, when I finally felt like I could do ok without.

    There's nothing more frustrating than trying to convince someone how bad things are when they really don't want to hear about it. (Denial on their part). Believe me, some of my family is bad-mouthing me for not helping take care of my mom for the last year - even though I had a wife with dementia at home that took my time 24/7. They are just p.o.ed that it inconvenienced them to have to deal with her this time, when my sister and I have always been the ones to do it up till now.

    You won't get an award or gold star for what you are going thru. But someday, you can look back and say... "yes, I did what had to be done, and i'm stronger for it". There's a lot of satisfaction in that.

    I hope you take the comments, etc from all of us as trying to help you, not beating you up. You'll get a lot of no-nonsense, straight forward advice from this group because they really care, and that's what you need to make it through.

    And please don't beat yourself up, either. Believe me, you'll make mistakes. But if you are doing the best you can, that's all you can do. There is no instruction manual. And every case is very different. Just take it a day at a time. And remember.. NO GUILT.

    Have a good day. Later. St. K

     
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    Old 12-23-2009, 06:51 AM   #77
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    Re: My Parents are Lost

    I have a doctor's appointment for Monday. That was the soonest he could see me. I made the appointment with mom and dad's doctor and told the person who scheduled the appointment that I was wanting a chance to discuss my parents need for a formal diagnosis with the doctor while I was there.

    Leepers, as far as the diet, supplements, etc are concerned, I'm sure there is valuable information there, some of it I've come across already and think very valid. It just isn't what I've ever taken up as a lifestyle for myself and I know I am not ready to embrace it for my parents. Their bodies are already out living their minds, and I have no convidence in any of this to make any improvement in their cognition.

    Love, JoJo

     
    Old 12-23-2009, 10:13 AM   #78
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    Re: My Parents are Lost

    Glad the appointments has been made Jojo The sooner you know exactly what you are dealing with the better! As someone else suggested in another thread... you might want to write down your concerns for your Mom and Dad and drop it by the doctor's office prior to their visit. As that the doctor look at it and it be put in their chart. That way they have the needed information up front.

    I am with Ken on one point. When I started this I was not sure I could do it. As time went on I found out exactly what I was capable of... it was has been so much more than I thought in the beginning. It's hard but it's also rewarding and teaches you much about yourself

    I too would like to know your care giving experience leeper Do you have a loved one with dementia?

    love, deb

     
    Old 12-23-2009, 12:27 PM   #79
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    Re: My Parents are Lost

    Good for you Jojo on getting an appointment so quickly. Knowledge is the most important thing you can have in dealing with this. K

     
    Old 12-23-2009, 02:20 PM   #80
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    Re: My Parents are Lost

    Quote:
    Originally Posted by jojo1109 View Post
    OK, I checked my mom and dad into the hotel last night. My dad was a mailman for 30 years, he drove an armored car as a part time job, he volunteered for meals-on-wheels for years - he knows this city, especially this side of town like the back of his hand. When we were getting ready to leave yesterday I told him exactly where the hotel was in case we got seperated, and all he could say was "I don't know". It's only 8 miles from home, he worked at the post office two blocks away for 10 years. I tried to talk them into letting me drop them off and they use a cab if they wanted to go somewhere, but NO, they had to have their car so they would have the freedom to go whenever, where ever. So they followed me over there yesterday, me going dad's speed which is 10 miles under the speed limit, and pulling over whenever a car got between us, and slowing almost to a stop at any stop light I thought might be changing so I didn't make it through and they didn't. It was a very stressful 20 minutes. After they were in their room I went to the front desk and got a menu from every restuarant that delivered to the hotel (it didn't have it's own restuarant, which sucks) but my dad refused to spend the money for delivery. I called a couple of hours after I got home and they had found a restuarant, had a very nice meal and were fine.

    Today at 1pm as I was getting ready to take Jasmine out the front door to get to the back yard I saw them drive by. I knew they had come to our neighborhood to have lunch. They didn't stop - there were trucks, and trailers everywhere. but I thought, well maybe it is good that they have their car and can get out during the day. Four hours later, at 5pm they were at the front door, they had been trying to find their hotel all this time. I KNEW I should get in my car and lead them back there, but I didn't want to. And they didn't think I needed to, so I told them the directions, I wrote them down, I highlighted the route on their city street map, I had them repeat the directions to me, I gave them the telephone number of the front desk at the hotel in case they had any problem, and I let them go off. Now an hour and a half later they still aren't there, and the hotel hasn't heard from them. I am feeling so guilty, and I'm not sure what to do for them. Call the police? Go out and look for them myself?
    All I can say, is hang tight. They'll probably show up on their time--at least they have each other right now. Aren't there those little devices that one can clip on so that you can monitor, I forgot the name--will your Dad be flexible at all or is he extremely stubborn--don't be so hard on yourself--you are doing the best that you can.

     
    Old 12-23-2009, 05:00 PM   #81
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    Re: My Parents are Lost

    Today has been a bad day. This morning was fine, after breakfast I told him he needed to write the check for money for everyone's present and told him where the other bills he wanted to pay were. Then I went to get the flat on my car fixed and drive it to my daughters and leave it there and drive Dad's car home. It took maybe 2 hrs. When I came home he started yelling that I couldn't leave again, that "someone" had called and the "thing" was going to be turned off. I couldn't tell me who or what at first, the he said "the water". He was furious at me because I taken "it" to them. And then he was furious because he would have paid it on time if I hadn't taken his car away. I called and talked to the water co. and his bill was past due, but they don't call people. I looked thru other utility bills and didn't a late one, looked in his check book and there was a bill with a disconnect notice.

    A few minutes later, I was fixing cereal for my breakfast/lunch, he jumps up in his chair, glares at me and the start yelling about what did I do to the TV, he get up and comes towards yelling that I had done something, and that was a little scary - then I noticed he thought I had the remote. I yelled at him I didn't do anything to his TV and to stop yelling at me. He starts looking around for the remote and there it is in HIS chair. I don't know what was going on with the TV, I didn't notice channels changing - either he imagined it or accidently hit a botton on the remote.

    After I ate I told him I had talked to the Water Co. and told them we would be in to pay the bill Mon. He starts yelling again that no we won't go Monday, we'll go today and I agree we would go went I took Mom to her hair appointment at 3:00pm. I asked him if he had written the check for Christmas money yet and he said no, he would do that right then and I watched him sit down and thought he had started to write it. At 2:20 he wanted to leave to pay the water bill and I told him I wasn't planning to leave for another half hour. At 2:30 he was asking Mom if we could take her there early and said I was ready to go if he wanted, and where was the Christmas check? He hadn't written it yet. He sat down to write the check at 2:35 and finally finished at 3:05. I thought about asking him if he wanted help but didn't want to face his rage. Mom was standing over his shoulder and knew it was almost 3:00pm. I knew this was a last minute appointment I had made for my mother that morning and that the hair dresser had several openings and was working till 5:30, so I decided to wait and see how it played out. I was courious if Mom would notice anything "off" at how long it took Dad to write the check, she didn't.

    We got her there 15 min. late, went and paid the water bill, went to the bank where we got the Christmas money and Dad cashed a check that was a dividend or some kind of payout on an IRA, that I don't know anything about. It was $150 and he put it in his billfold. When I dropped off home after going to the post office (the one that doesn't have the holes in the mailboxes), I came in for a minute and he ask me to come into his bedroom where he was counting his money. The bank had shorted him he thought. He thought he had cashed a personal check for $200 which he usually does so that he will have money in the house, and deposited the check for $150. Or something like that, it was really hard to figure out what he thought. He couldn't understand or believe me when I tried to tell him what he had really done.

    When I was leaving to pick Mom up he asked me where his driver's license was, I finally figured out he meant his car keys. It only took 4 hours of having his car back here for hime to start asking for the keys. I put the remote keyless control on my key chain and the ignition key is on a long chain around my neck.

    This is the first time I've had to deal with any type of agression or rage. It probably wasn't nearly as bad as what you guys have experienced, but I wasn't expecting it to happen, and when it did I thought it might excalate beyond my control; this was always the experience with my mentally disturbed granddaughter when I tried to raise her. I've called about the temporary residency at the assisted care facility and I can get him a room there in a emergency, on a week to week basis. I called his doctor's office and they said if Dad's refusing to come in, which he is, I should call the CICCOA, and gave me that number. I don't know what that is, but she said I would be assigned a case worker and led through the process of getting them diagnosed and in somewhere. I'm calling the lawyer tomorrow morning and trying to get an appointment before the first of the year. I'm planning to call more facilities and see if they handle mid to late term dementia, or whatever term Dad is in now and will be going into next, and I know I can't know that for sure until I get a diagnosis. Is there anything I'm forgetting?

    Love, JoJo

     
    Old 12-23-2009, 05:57 PM   #82
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    Re: My Parents are Lost

    PtC, I think you're talking about a GPS system. That would have been nice to have that night. Now that they're not driving I don't think I need it.

    JoJo

     
    Old 12-23-2009, 08:51 PM   #83
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    Re: My Parents are Lost

    So far what you are describing is very typical behavior. They do not remember. It is not like how we forget and go back later and say "oh yeah I forgot that". To them it NEVER happened. Dad went to the bank and did something out of the ordinary. He cashed a check for $150. But the only banking memories he has are of his routine which would give him $200 in his wallet... so the bank had to have done something wrong. This is his reality. To him it is just as true to him as your reality is to you. He is just as sure he is right as you are... but he's shorted $50 and that he can't grasp. Why would the bank do that to him? And there you stand telling him he is wrong. Now he's scared, confused, and frightened. BOOM....you get the explosion because you are standing there when his reality doesn't fit.

    The cut off phone call was the same. He had NO clue why he was getting that call. He didn't remember the bill or understand why they would cut of anything. Then he forgets most of what the caller said. Panic... He thinks he did everything right but for some reason they are cutting off something tht he knows he needs. It can't be his fault so it has to be ... yep... YOURS! BOOM... you get the explosion because you are standing there and his reality tells him that it can't be him that is the problem.

    As for writing the check. Instruction leave as quickly as they are given. He can sit down to write the check, see a note about something else, and what he was there for is gone. Even when he attempts to write the check it is a difficult task for him. He has to know what day it is, what the dollar amount is, who to write it to, to sign it, and which line to put everything on. To us it is simple but to him it is a very complicated task consisting of many steps that blur together or scatter making it difficult. He will not know to ask for help because he doesn't have a time frame to realize it is taking hours instead of minutes and he really doesn't realize that he is not doing it not only timely but correctly. The dementia mind doesn't let them know they they are doing it slowly or incorrectly... they just do what they can and that should be ok. It is not them that has a problem... the rest of the world has gone crazy around them

    Like I said before... once his car is back in the picture he will forget everything that has been said, want his keys, and want to know why you are not letting him drive his own car. It's not like he can remember what you discussed earlier in the week.. Today is a new day and all he knows is that he has been driving all of his life. So expect exactly what he gave you today... Where are my keys? Why can't I drive? What gives you the right to tell me what to do? This does go away quickly... my dad kept it up for years!

    When you talk to your doctor you need to ask him for something for your Dad's anxiety. You need to explain to him how your Dad blows up at you when his reality doesn't match what really happened. There are medications that will help and not make Dad a zombie. It will be beneficial to him to have a calmer outlook on life and it will be a benefit to you not to have to put up with the outburst. That needed to be added to the list of things to talk to the doctor about.

    A quick web search told me that CICCOA (CICOA)... is the Central Indiana Council On Aging. That would fit with what they promised. If your Dad refuses to go to the doctor you can try a few tricks. See if you can get your Mom and Dad appointments at the same time and tell your Dad he needs to go with Mom. When you get there you can tell him that the doctor needs to talk to him. Walla, he's in for the exam. Any excuse to get them there. I am sure you have read here before that sometimes you have to warp the truth, stretch the truth, fabricate your own truth, or leave out information to get where you want. Sometimes it is easier on you and them not to discuss what is going to happen before it happens.

    Mom refused to go for testing. She swore there was nothing wrong with her. I finally just told her that we were going to Wilmington to an appointment so get ready. I didn't tell her for what. When the doctor was talking to her she realized what was going on but went along with it to "prove me wrong". That is exactly what she told the doctor. What I got was a diagnosis that was far worse than I expected. She was diagnosed with Moderate to Sever Dementia consistent with ALZ... I expected moderate at the worst! She expected to be declared to be FINE. She was distraught when she walked out of the office but by the time we were in the car she was making excuses for why she didn't do well on the test. By the time we got home she was FINE again!!! It was only a blank memory for her but I had what I needed.... I very detailed explanation of the deficiencies in her cognition. It was something to explain what I was seeing and to let me know where we were headed in the near and distant future. Yep it was worth the little bit of deception that it took to get her there...

    If that doesn't work then call the number the doctor gave you and they will come to him.

    Love, deb

     
    Old 12-24-2009, 01:08 AM   #84
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    Re: My Parents are Lost

    Hello Ken,

    I am new to this site. My personal story is that both of my parents died many years ago; mother, at the age of 64 in 1989 and father, at the age of 82 in 1995. I was the primary care-taker for both. My mother died from kidney failure and my father died from lung cancer (addicted to cigaretts and worked in a coal mine) and had dementia in the latter stages of his life. Neither of my parents lived healthy (both were chronic alcoholics and cigaretted mokers....father stopped drinking, but couldn't stop smoking...even as he was lying in bed, he made numerous requests for a cigarette). I believe in my intervention, his dementia greatly improved, but the cancer (or complications from cancer?) is what he died from.

    I truly understand that there are so called, "Miracle Cures" which allege to cure a myriad of conditions. In fact, I believe that extensive research (as well as informing ones' doctor, if applicable) of any vitamin/alternative medicine is very important before using it/them. Of course, even then one never truly knows what is in most, if not all of these things, even if you have them analyzed. I made that comment about diet because in several posts by jojo, she mentioned foods like pizza which made me wonder about the daily food intake of her parents. I do not believe that eating a pizza, a doughnut, cake, every once in a while is the cause of dementia; I do however, believe that eating unhealthfully does not help the condition and may enhance it.

     
    Old 12-24-2009, 05:36 AM   #85
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    Re: My Parents are Lost

    leepers, I can see why that post would make you wonder that. They enjoy a pizza supper on Sundays, sometimes, and it had be 6-8 weeks since they had one, so I thought that would be a good Sun. night supper that Sun.

    I would say Mom is moderately health conscious, and trys to have 2 servings of milk and fruit a day, at least one salad a day and a couple of vegies, although on is usually potatoe, uses olive or canaola oil, eats chicken, turkey, fish and sometimes pork. Only has beef or lamb a couple times a year. Whole grain breads, cereal and adds bran to cereal for fiber. And I plan to follow her eating plan for them when as I take over planning and preparing meals.

    ------------------------------------------------------

    St. Ken (and I can see how you earned the name) I really appreciated that you shared - I can't remember exact words - your experience of growing into the roll and finding that you were capable of more than you realized, and encouraged me that I could do the same.


    -------------------------------------------------------------------
    Deb, I love how you can explain to me so clearly what my parents mental processes are and what it probably looks like from their world. I'm glad you mentioned anxiety med. because I forgot to ask that. I was wondering last night if what I was dealing with was the agitation you all have mentioned and that I didn't think applied to my situation. I don't feel so afraid of the situation this morning. It's unpleasant, and had my guts tied in knots, and I was being reactive and defensive. I was probably talking in the same tone of voice and volumn as he was, which I'm pretty sure I need to not be doing. What irks me is that at the time it really want to be able to reach doctors, lawyers, agencies, etc. everything is shutting down for Christmas, and then next week for New Years. I wish this was a different time of year.

    Love, JoJo

     
    Old 12-24-2009, 08:07 PM   #86
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    Re: My Parents are Lost

    Hang in there Jojo... it is a difficult time of year but it will soon pass and you will find the answers you need. I do remember my impatience once I decided on a course of action. Just because it took me months to come to a decision why shouldn't I want it done NOW!!! You will come up with more questions for the doctor. Once they begin they seem to be never ending for a while. That is why I love my journal! When you write it down you tend to remember.

    Leeper, My Mom and Dad were the epitome of healthy living. We raised most of our own veggies as well as raised cows. I didn't eat store bought beef until I was married. My Dad suffered from chronic consistent ulcers so we never ate pizza or fast food or any of those things that have now been labeled bad for you. A coke was a treat in my house! When my Dad had his first heart attack he was told he had to walk LESS! My Mom did her 5 mile walk every morning until she started getting lost on her route. In our house healthy living was there before it was cool! Mom is now 80 and Dad is 89. They have lived a healthy life style with very few physical ailments. But now the body has outlived the brain. My Dad has survived 32 years since his first heart attack should have killed him... except his heart was so healthy that it survived for ancillary blood flow from the bottom of the heart for 7 years with 5 of the 7 heart arteries almost totally blocked. My Mom is still a specimen of good health with no physical ailments to speak of. Yet I watched her shove pill after pill into her mouth once she figured out that her mind was failing. She literally hung all her hopes on the miracles they promised. When they failed her she fell into the first depression of her life.. and there she is now stuck.

    So that's my story

    Love, deb

     
    Old 12-25-2009, 07:35 AM   #87
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    Re: My Parents are Lost

    Deb, I have found Chpt.3 and Chpt. 9 in A Thirty Six Hour Day. It's going to be so important for me to have more compassion and understanding than I do now, it wouldn't be fair to my parents for me to react to what they will be doing as if they were doing it with a disease - free brain. They have been great teachers to me my whole life, and they are still teaching me: where I need to grow, stretch and change, I just pray for the grace to be able to appreciate the lessions and use them for both of our sakes.

    Yesterday I bought the weekly/monthly day planner, and a three subject notebook for a journal, to-do list and and probably services/resources/contacts list - whatever. It hit me Thurs. morning as I was able to reach CICOA and get a whole list of home assistant, memory evaluation, and other resources and started calling them that there is no way I can hold all this information in MY brain, or on one wall calendar.

    When I moved in here at my mother's urging (and only because of my own need to), mom had it all planned out. She would outlive dad, who would die eventually (in his right mind) from something like pneumonia or heart attack, then I would live here with her and help her out until she (in her right mind) would need to go to a nursing home. She wanted me to live here while she was in the nursing home and have the house after she died. And you know, I think I believed that if that was the way mom said it was going to happen, then it would be that way. To suddenly be hit with the realization that it is happening a very different, unknown, scary way threw me for a loop - and probably will for a long time. But it is dawning on me that this could be their final gift to me. If circumstances had allowed me to continue to wallow in my own depression and continue to withdraw from life,that would have been a whole lot worse (though easier) than what I am having to take on now.

    I thank all of you for your honesty and "tell it like it is" attitude, even when you're telling it about me and I don't want to hear it. I would have had no chance at all if I had not found this group.

    Love, JoJo

     
    Old 12-25-2009, 11:07 AM   #88
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    Re: My Parents are Lost

    Wow Jojo You have come such a long way my dear friend!! Don't sell yourself short ever again. You listen, you absorb, your face reality, and you put into place the pieces that you can use. Your parents have taught you well and you have learned much.

    I too bought my journal the day I realized that I could not keep all the information necessary in my head. It will become your personal reference book. I never leave home without it!!

    The compassion will come with understanding which comes with learning all you can about this disease. The more you know the more you can project into their world and understand where they are and why they do what they do. Then comes the compassion. I will have to admit that dealing with my parents has taught me much. It has taught me patience and the ability to look at life through another's eyes. It has taught me to be grateful for what I have in the moment and not fear/dread/anticipate what is to come in the future. It has also made me aware that life changes and I have to be flexible enough to adjust to whatever life throws my way. Yes, it does pull you out of your own world and throws you into another world where you either sink or swim. I will admit that I am more self confident, assured, and have a better self image than I did before this all started. If I can survive this... I can survive anything!!

    My dream of the future was much like yours even though my Dad was already diagnosed with Vascular Dementia. Mom expected to keep him at home until he died. Then she would enjoy her later years at home with her mind and her excellent health. At some point when she was unable to maintain she would move to AL closer to her girls and live out her life. That plan was turned upside down in a matter of days. Yep, the realization will throw you for a loop and take you out of your comfort zone. It will reorder your priorities, scare even your big girls pants, and make you wonder if you can do this. But one day at a time, with a little help from your friends, will get you through each day until you know you can do this

    So I say again.... never sell yourself short or doubt your abilities. You have already show what you can do!

    I do hope you have are having a Merry Christmas

    Love, deb

     
    Old 12-25-2009, 11:59 AM   #89
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    Re: My Parents are Lost

    Jo Jo,
    Your realization that this is a disease and that you must adapt to your parents new reality rather than insist they adapt to yours will serve you VERY well as you care for them. Your compassion and patience and love for them will see you through, if you allow these things to lift you up over the heartache, aggravation and exhaustion you will inevitably experience. And looking at this experience as a gift and an opportunity to grow is also a huge accomplishment. I cared for my mother and father in law and it was emotionally and physically exhausting, but it was also hugely empowering to me. They needed me and I was able to be there for them and care for them and keep them safe and happy and warm and fed and loved in their own home for as long as we possibly could and I have never felt such a sense of accomplishment from anything else I have done. You are open to doing the best you can for them, and that is the greatest gift you can give them!

    Blessings to all of you!
    Shell

     
    Old 12-26-2009, 04:06 AM   #90
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    Re: My Parents are Lost

    WOW! I miss the post for a day and so much can happen!

    Jojo. I am so PROUD of you. My dear, you have come a LONG way already. Sorry you've had such a rough couple of days. As far as your anger, etc. Don't feel bad. I'm sure we all went thru that phase. I have a bent Calphalon cooking pan to prove it (threw it across the kitchen and hit a wall with it just out of frustration and anxiety). And I didn't have any of the anger symptoms to deal with. Betsy was very docile and passive, don't know what I would have done with if she had been angry.

    You've had quite a tough week of wake-up calls and reality, and you are responding like a champ. Sounds like your dad is quite a bit further along than what i had assumed. They are SO good at covering.

    Leepers, thanks for your background story. Everyone has their own version of caregiving, which makes it hard to tell someone exactly what to do, but with all of our combined experiences, maybe they can put pieces from all of our advice and figure out something that works for them.

    Deb. You are so right about how this journey makes us all so much stronger. I really feel like there's just about nothing that I can't do now - which is quite a change from my former self image. Also at a point that I really don't care what anyone says or thinks about me. Life is way too short to sweat the small stuff - and it's all small stuff.

    Thanks to you all for being there for me for the last two years. Jojo. Hang in there, you are one tough chick, and you are going to be fine.

    Later. K

     
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