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When I started out on this journey as sole caregiver for my elderly mother, I had illusions that it would be like a Hallmark Channel movie. I'm not sorry I did it, but the personal cost has been more than I could really afford, with unhappy truths revealing themselves, rancorous arguments, crushingly difficult decisions, and pretty much no support from the rest of my family. I can blame myself partly, as I had little confidence in the rest of my family's ability to work together on this, and tend in general to go it alone. That's been borne out, but I think if I was starting over, I'd get the rancor out of the way early, and get them involved whether they liked it or not, or whether or not I felt comfortable asking for help. I'm not deceiving myself that the difficult would suddenly have become easy, but I think the personal toll would have been much less.What are your thoughts?

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08/23/16.... I would do it over again BUT I would have set boundaries at the very beginning.

I didn't live with my parents nor they with me. But I was too quick to say "yes" to running errands, going to tons of doctor appointments, groceries, taking them shopping, buying them clothes, etc. Doesn't sound like a lot in comparison but I was working full time. It became very stressful and exhausting. I had a very serious illness during one point, and my parents didn't understand why I could take Dad to get a haircut.... [sigh].

It wasn't until years later that a therapist told me that if my parents wished to remain in their house, with a lot of stairs and them being in their 90's, then my parents had to take full responsibility for their decision. I was helping them continue in their normal lifestyle while having to change my own.
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If I had it to do over, I would do the same thing if the circumstances were the same. I never expected anything from my brothers, so wasn't disappointed. Doing this has taken a huge toll on me, but circumstances being like they were, I don't see any other good alternative. My parents are who they are and were not going to change at all. They could have gone into assisted living, but absolutely refused to leave their home. I could think of a lot of better scenarios for elder care, but we have to work with what we have.
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Never ,ever would I do this again , if only I could go back in time.
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Ribbman, as I read your post I thought fleetingly 'did I forget writing this or something?!'

Life is lived forwards, but can only be understood backwards. Kierkegaard, I think - I read that quoted in a novel, the day before yesterday.

Yes, I would do it again. But only if I could do it with the information I've learned the hard and costly way, as you have.

So does that mean, if we're asked by others, that we recommend taking it on or not? Because their challenges won't be quite the same, and what they need to know they will have to find out for themselves.
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It's not over yet but yes. Hindsight is 20/20 they say, so perhaps I should have pushed a little harder for a diagnosis and prognosis... I thought she was dying three years ago and it would be over fairly quickly. I try to re-evaluate periodically and if the answer ever becomes no I will know it is time to try something else.
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freqflyer, you write "I was too quick to say 'yes' to running errands, going to tons of doctor appointments, groceries, taking them shopping, buying them clothes, etc."

Did your parents call you up all the time needing this and that? Were you the only one that drove them anywhere? I am wondering, because I will be my mother's transportation when she stops driving next month. She SAYS she won't expect to be taken places all the time, but I wonder. She's already made it clear that she won't pay me to take her places (she is giving me her car). I am not willing to drive all over to save her a few cents on something. I am planning on taking her to weekly Mass and doctor/dental appointments. I want to take a list and do her grocery shopping when I do my own. I don't think she is going to like that. But it takes HOURS to take her anywhere.
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CTTN, does your mother live anywhere near a friendly taxi service? My great aunt stayed independent for donkey's years by taming one or two regular cab drivers. And I see you're wise to it - don't let the 'gift' of the car turn into an obligation!
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Yes, Yes and Yes.
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She will not pay for a taxi. She saw a taxi outside of a medical building, and asked the driver if he charged while waiting for someone at a medical appointment. When he said yes, she tried to tell him off by saying, "Just wait until YOU are old!"

She has excellent LTC insurance plus significant assets. She is afraid she will run out of money (no way). At one time she talked about selling the car and using the money for taxis. I wish she would do this! I am going to set boundaries, and if she doesn't like them, I will tell her she can call a cab.
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Would I do it again? Only if "I knew then, what I know now". At this point I don't believe we would have arrived at a different outcome - mom is in a nursing home under hospice care. However, if I had gone into this understanding dementia I could have saved myself hours and hours of pointless augments and frustrating attempts to reason with my mother. I also would have developed a thicker skin when it came to the insults and crule statements and accusations. But yes, since my mother needed help and I was determined to be the one to provide it - I guess I would still have walked this road.
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Yes, I would take care of my mother as it's my responsibility. But knowing what I now know.................. I would not take care of my MIL if I could roll back time. Or at the very least I would require - in writing - decent monetary reimbursement for giving up my life for years. My BIL apparently believed my caregiving for HIS mother was.............. worth nothing.
Know that my wonderful late husband was total opposite of his brother.
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Good comments, all! I'd have to say, that if I didn't get the family involvement, I might have simply left things alone and let them go along uninterrupted. Mom would probably be gone by now. Sometimes it seems like she might have wanted that, but who knows? Life is so tough, sometimes.
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As challenging as it has been, I think that I have become a better person due to this experience. I learned of a world that I never knew existed. I learned so much about human suffering and compassion. I'll never view life the same way, that's for sure. The good days are now so much sweeter than before. I treasure my health and thank God for all my blessings. Having sound mental health is my most cherished gift. I know that I have it easy as compared to many other caregivers. I do feel for them and wish I could help.
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Ours is a family effort--Dad splits time between two households--and we are unanimous in that if we were to do it all over again... we wouldn't. We wish we'd talked to an elder care lawyer sooner about our options. We wish we'd looked into assisted living sooner and gotten him to go into one. He didn't ask to have dementia, but we didn't know what we were getting into. There's lots more to this, but in short: wouldn't do it.
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CTTN55, regarding driving my parents, I never in my wild dreams ever expected my parents wanted to get out of their house 2 to 3 times a day. That is what they use to do back when my Dad was driving. Mom would want to go to 3 or 4 different grocery stores in one week because one store would have a sale on bread, another had sale on fish, another had a great deal on apples... you get the picture. Good grief. And taking my parents grocery shopping would take forever, as Mom's eyesight was failing, and Dad was bored silly.

I didn't mind driving as long as I could use my Jeep, but a year into driving my parents I had to switch to using their car. Oh my gosh, I would get car sick just backing that monster of a vehicle out of the garage. It was terrible to drive for many different reasons. Eventually I started to get panic attacks driving, then got panic attacks the day before just thinking about driving.

I tried doing grocery shopping using my list and my parents list. What a mess pulling around 2 shopping charts, and I found myself putting their items into my cart and vise versa. Enough of that. I went to using Peapod on-line grocery shopping... my order would be ready the next day and all I needed to do was pull up in front of the store. But unloading their groceries, then unloading my own, it was killing my back. Hey, I was a senior citizen, too.

My parents refused to use a taxi... ride with a stranger, no way :P
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I would have to say yes, I would still be caregiver for my Mother. Just this past weekend I went to our local nursing home to visit someone and going in and coming out I was overwhelmed knowing how I would regret having to leave her there.
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Yes, I would do it over with my husband. He remained at home with dementia for 10 years.

Yes, I would do it over with my mother. She is in a nursing home.
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Yes, but I would go about helping Dad in a different way. I don't regret taking him to stay with my husband and me for what we thought would be a few weeks of recovery from a fall. However, we should have allowed him to go to rehab after his hospital stays. We thought he'd do better with us, and possibly he did, but the stress was absolutely overwhelming. I also wish that I had insisted that he hire a caregiver for a few hours a week when he first moved into independent living. He might have been more amenable to the idea at that time. Now I don't think he'll ever agree to any paid assistance.
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Knowing what I know now, I would not do it again. But I don't know how I would avoid it, honestly. I was totally blindsided by my mother's neediness, her laziness, her expectation of keeping everything in her life just as it was when she was able-bodied, her willingness to make demands on me and impose on my time, energy, and goodwill. My mother had always been a very independent person, and I had been also. My mother gradually changed from "I never want to be a burden on my children" to "Well, I did it for you when you were little" and "When you get to be my age, you can expect to sit back and let other people do for you." It took me a long time to be able to put my foot down and set limits with her, and during that time she had of course become older, needier, and quite dependent on having me around to do for her. I still haven't been able to extricate myself to the extent that I would like to. I think the only thing harder than standing up to your parents when you're young and helpless is standing up to them when they're old and helpless.
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Carla's words ring true for me as well.
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I think I would do it again but differently, with much firmer limits in place, and much less personal involvement. The ideal for my mother, in my view, would be non family, a professional, say a psychiatric nurse, for POA medical. POA financial would have been quite enough for me. With my sister's bent to want all the money and make accusations at me, it would have been easier on me for a professional to have done that too. Hindsight is 20/20.
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freqflyer, thanks for sharing your experiences. I can definitely see my mother wanting to go to three different grocery stores like your mom did! And she is so slowww....it takes hours. (And it further exasperates me when she directs me to take a certain can, carton, jar. Part of the drill is that I must reach to the furthest back on the shelf item to get the best sell by date.) She doesn't go out that much now, but when she does it is to Mass, the store, the drugstore, and the nearby mall to walk (where she meets people she knows). Once she stops driving, she will be going out once a week to Mass, unless there is also a medical/dental appointment. I'm wondering if she expects more...I'm guessing this will all come to a head when she gives up driving.
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My dad was always an active person who enjoyed going out to eat, shopping at various stores, and so on. I don't want him to spend the rest of his life without the chance to participate in some of the activities that made his life fulfilling in his younger days. It's a lot of work, but in addition to taking him to medical appointments, we try to take him on some recreational outings, too. We generally take Dad out approximately every other week for an excursion that includes going to the bookstore and to his favorite gourmet grocery store. I'm also trying to include a few more special outings lately, such as going out to lunch.

CTTN55, Why has your mom decided to stop driving? Have you told her the limits on the trips you're willing and able to undertake?
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08/24/16..... CTTN55, watch for the guilt trips. Any time I said "no" my Mom would say "if you needed a ride, we would have driven you".... [sigh]. The last time Mom worked outside of the house was back in 1946, she forgot how time consuming being away from home can be and how much limited time a working woman had to do her own household chores.

Ah yes, the "sell by" dates on grocery products. The situation I had was re-shelving the grocery products due to my Mom's limited eyesight, she would grab a can, read the sodium level, and put the can back where ever... I wanted the can back where she had originally found it. I hated trying to get items on the very top shelf [it made me dizzy looking up] and items on the bottom shelf because at my own senior age I had trouble getting up :P
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My mother would have stopped driving a year ago.I didn't offer to be her chauffeur. (To be clear, she does very limited driving in daylight hours -- parking is her biggest challenge.) But she's really going to hold firm on not driving now. She just turned 90.

Yes, freqflyer, I can hear my mother saying just what yours said ("If you needed a ride, we would have driven you.")! AngieJoy, some time back I mentioned there would have to be some limitations on giving her rides, and she got a bit upset.

I've learned from this forum that I will have to start setting boundaries from the very beginning. She will be the type to give an inch and she'll take a mile.

She has chosen to isolate herself, because she could be living in a senior community.
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Freqflyer, We have the same issue with reshelving cards at the card shop. Dad will jam them back into the display at any convenient location. I want them reshelved properly so that other shoppers can find them, and so I usually have to clean up after him, so to speak, when we go card shopping.
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