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That it makes life so wildly unpredictable, you need back up support in some form to backstop you somedays and deliver respite care other days. Although the actual answer, for me, really is, "don't do it." That's the truth.
I wish I would have understood how Medicare actually works. I was told in the hospital that my mother would have 100 days at the rehab center. We get there and find out that while that is true, the patient must be improving to qualify! Mon is non-weight bearing for 8 weeks. We could have taken this money and gone to the Ritz Carlton and fed the sea gulls for 8 weeks and then returned for physical therapy. Also, much, much earlier that what I did, I would have recognized the need for outside help and not have put it off to appease my mother. Didn't want to anger her!
That its a job that you can't quit easily. Once you're the help, you're always the help. There's no way out. I would've moved far away if I knew I'd be stuck here being their complaint department, errand runner, grocery service and driver. I'm resentful. I'm lucky in that they don't live with me, and they never will. I'll never do this to my children. Of course, after having a grandmother live with us when I was growing up, my mother said she'd never do this to her children. But, she'd move in with me in a second if I offered it. She's forgotten. I hope I don't.
I wish I had know not to expect any help from my four other siblings. However, I would still make the same decision to try my best to make my mothers final years as good as I can for her.
Well, tbailey and GrandpaHiker answered for me. I too have 4 sibs. I wish I'd have known that all the love that is so freely expressed in my family, was just lipservice.
Had I know how mentally exauhsting this is, I would have gone into another field.... That dealing with the family is sometimes much harder than dealing with the person with Alz...
The thing I wish I would have known about is all the decisions you have to make that you are just not prepared for such as DNRs, hospice and nursing homes, it's just overwhelming.
Not only is no one willing to help, they stab you in the back while you are sacraficing life, health, sanity and youth. I believe it is because they feel guilty. No word from them in years...no card, call or even inquire about mom. They will come crawling out of the woodwork if she passes. To make a caregiver's contract. Although that sounds silly to me even now. She's my mom. I love her.
I wish I would have scheduled a productive plan that would include my self care in place when I started so that no matter how crazy and demanding caregiving got I would not allow my own personal needs to be put aside. Making this distinction is very difficult to do because you become so involved in doing a good job of caring for your loved one that we have a tendency to think "what are my needs compared to theirs in this situation" we forget our own needs until it becomes a huge problem and resentment creeps in. I think if I would have scheduled specific activities for myself each week when scheduling appointments for my Dad's needs I would have recognized right away when I was doing to much and would have learned to ask for help or seek help much sooner. So basically we need to get tired while including our own activities and then ask for help without giving up our own personal activities.
I already answered once about no one will probaly help also wanted to add one thing I really was desperate when one night searching for a ailment of my MIL's I found this site... I would say join aging care because when no one else is there for you there is a group of loving people thats been there some done that but great group of people that just might help you get through your day as a caregiver.
These comments are very touching. I am glad I found this site before my mother really needs help. It has opened my eyes to many things. Her present problems, her future problems and my sibling who is doing nothing to get things in order so he won't be the sole caregiver. I see what is coming, he has not a clue. Karma.
Thank you, all. I appreciate it!! I'm seeing a few trends here that are obvious to all of us here, but may not be to the person who has yet to take on caregiving. That's what I'm trying to address; so they don't go down the slippery slope. I hope more peeps will chime in with their ONE thing they wish they knew before taking on caregiving.
Hi SS, The hardest thing for me to cope with has been the betrayal of my family. They have acused me of terrible things that aren't true and basically neglected me and mom. The only reason they are paying attention now is that I tried to commit suicide and they are afraid that I will hurt mom. I;ve never done anything to harm my mother, but that is their logic. Again, they don't care about me.
I knew right from the beginning that my sister and brother wouldn't do anything to help me and my husband with my mother. I've done EVERYTHING for her. They would never visit her when she was healthy and lived alone. I always made sure she had food, meds, care, took her to dr appts etc. Then when she had several falls and couldn't live alone any more, I was there for her. My husband and I visited several Assisted Living facilities in her area so that my sister and brother would be close enough to visit her. They both live about 10 min. away and she's been at AL for almost 2 years now. I can count how many times my sister has visited on 2 hands and my brother on 2 fingers. I live an hour away and must travel to see her and take her to dr appts. and make sure she has anything she needs. I see her at least once a week sometimes twice and I call her every day to make sure she's ok. I just want to make sure she can depend on me to take care of her needs. My siblings obviously could care less. That's really sad. I've asked my sister a few times to pick up a few things for her and I hear sighs and groans all the time. How can you let 1 person do everything. Thank God I have my husband. He stands by me and the only complaint he has is that when I get upset, he gets upset and then he feels like going after both siblings. I might as well be an only child. I don't regret what I've done for my mother and at least when the time comes and she's not around, I'll know I did the right things for her. I couldn't even get my sister to take off an hour from work to make final pre-arrangements for my mother for Medicaid eligibility. My regret is that I should really read my sister and brother the riot act but then they'd never visit her. I could've told them off so many times and for good reason. They obviously don't care about her let alone me. I also feel betrayed.
That they grow old and frail. Does that sound naive? You're darn right it is. When my parents moved in, they were in their 80's and amazingly healthy and agile. My Dad walked a mile a day, went to religious services every morning, shopped all the different markets and drug stores to compare prices and made friends immediately. My Mom did everything. At 92, my father passed the California driver's license test. He drove on his RI license til it expired. LOL. I had this vision of shopping with my mother, holiday gatherings, nightly dinners where we all told stories, one great big happy family. Intellectually, I knew they would grow old, but emotionally I was totally unprepared for what was to come and no one told me to be ready. It didn't matter if my brother wasn't that helpful; I didn't need him to be and didn't set up guidelines at the beginning. They managed their own meds, did their own shopping, were cantankerous on the one hand and helpful on the other. My grandson had a grandfather who watched Red Sox games with him and taught him that the New England teams were the best. My mother doted on him and they both were there when my granddaughter was born. AND THEN, TRUTH. Dementia, illness, no more driving, being in charge of absolutely everything. I remember when my Dad was still mentally alert and soiled himself. I was cleaning up this proud man, who was once a giant in his community, and he was crying, "I didn't mean to be such a burden." He wasn't. But now there was a new normal and things changed daily until he passed away last year. Not a minute without it's being about his care. Emotionally I was falling apart, but we saw it through. One free year and now my mother is going down hill. Not a minute without it's being about her care. I am exhausted and the fantasy I had is over. I wouldn't change it, but I wish I had been more realistic. It's hard, really, really, really hard.
Instead of being thankful we took my dad into our home & have provided 24/7 loving care, my sister only concentrated on his money. She never offered to help & was nothing but critical. We weren't close, but I never expected the verbal & emotional abuse she unleashed on me. The other is how rapidly Alzheimer's & dementia can progress :(
It just sort of " fell to me " as the " retired" sibling in town.....it is the most mentally grueling marathon I've ever undertaken...this from an Old, Retired, RN, who is the caretaker for the past seven years of a nearly 91 year old mom since our dad died. She is at once, sweet, funny, at times unkind to me, and an alcoholic for the past 45 years. My sisters rarely come in town to visit, much less to help. It's not fun...I often feel trapped, full of disdain, with no way out. Thank goddess she doesn't live with me. But I often think of just getting in the car and driving away. I definitely don't want to do this to my kids either, and hope there will be other alternatives figured out in the next few years. Any ideas about what we can do ???
I wish I had known how hard the decisions were going to be, and how hard it would be to keep it up once her emotions of love were gone. I have learned that I want my wishes in writting NOW, and to pour love into my family NOW so that if my emotions leave, maybe my family can remember the real me.
That if you have school-age children who are active in school, activities and frie.de, you will be unable to be the parent you want to be due to last-minute vs.cellations due to "nana's mood swings". That the pain of doing this over and over winds up in unending guilt and resentment (you toward the parent you are caregiving and the children toward you). That the stress of your children wanting something as simple as having a friend over is sometimes impossible....and when it DOES happen, you will be in a constant state of panic making trying to make sure nana doesn't start masturbating, berating you, swearing, throwing things, etc. *sigh*
Be prepared for your parent to think that those out of town siblings are" wonderful, and doing the best they can", that they are "busy", since they might still be working ( like youre not!). They often find excuses for their inexcusable behavior! Be prepared for aging parents to become very different from the parents you knew when you were younger. They often become angry, and very suspicious. Saddest of all, while they may pay lip service of gratitude, they often take you for granted and expect you to take care of them.
Kackie - Thanks for chiming in. Yes, I have lots of ideas. First thing is, do you have long term care insurance? If you do not, buy it now and shop for pricing. It is one of the only ways your kids won't have to take you, financially at least. Your post summarizes WHAT I'm trying to solve. I need the responses to keep coming. I don't know if it is legislative (I'm not much of a politician), common sense or just down right planning. I think the latter is the key and I want to help others NOT be put in the situation we are in. I'm exhausted too. My Mom drinks too and lives 4 miles away. Thank God. I have NO sibling support and one who hired a lawyer because she thinks I'm spending their money. They don't HAVE any money....that's the irony. She can hire 40 lawyers, will find no wrong doing here. Yes, how long can this go on? As long as they are living and as long as we are willing to take the abuse. I took a HUGE step back about two months ago. I said, "If you want to live independently, then be independent." I have hired car services, meals on wheels, social activities she can opt for ,(she doesn't because she soooo tired all the time because she self-medicates). I'm sick of hearing all the complaining, yet I brought it on, because I moved them here three years ago because I couldn't stand walking into their house that was filthy and smelled like urine. So that's the story. I think it's similar to your story in some ways and how many more are there like us, out there? Thousands. I want to them them. I want to help us. Thank you to everyone. Please encourage others to post their ONE thing they wish they had known. xo -SS
WOW! Our stories are more similar than dissimilar! Today I spent my entire Memorial Day at the hospital...thos time mama meeded a pacemaker put in. I can't tell you how many holidays, nights, and weekends have been spent at the hospital...and we even have a DNR signed! But there is always something. I, too, moved my mom to my city, one hour away from where we lived all our lives, and all of my parents adult lives. When dad died, my husband and I thought it would be better to have mom closer, as we knew the "emergencies" would be happening more and more frequently. So we moved her to a senior living center 20minutes away. Every week, when things are going well, she pays a limo service nearly $200 to drive her over to her old town to get her hair done and occasionally play bridge. When she wins $4 she is so excited to tell me about it. When I offered to take her over there for the same amount of $, she no, that I'm her daughter, that it should suffice she would pay me for my gas and lunch. Later, she said she would think about giving me $50. I told her no, I wasn't interested. We see her every Saturday and go out for breakfast together. Her mobility is impaired but we do alright, we just move very slowly. She is often very sweet and loving, and occasionally very cruel about physical features I have no control over. She is always helpless and lets you do anything you will for her. I have never, in my entire adult life, been able to call on her in the evening about anything. She was always inebriated. I called her my 9-5 mama. She was great during those hours, problem is that's when I was working and the kids were in school. So she wasn't of much use when I was raising my kids. But she was sweet and nice when she was lucid. It just makes me sad. I never talked about it to anyone because I felt sad, alone and embarrassed. Now I just don't really give a damn anymore. That's probably why my sibs don't get too involved either. Honestly, I often just wish it were all over instead of just dragging on and on. Thanks for letting me vent...it really helps to share with others. And best wishes to you, I know it's not easy. Just keep writing and sharing....all of you!
I have heard that long term care insurance, especially, anything reasonably priced with decent coverage is getting harder and harder to get. It seems that when it was originally setup they didn't know how long people were actually going to live given the medical advances of today and how long many are living in nursing homes. Additionally, there are so many boomers, I think the insurance companies may be overwhelmed with the staggering numbers that may need to be served for indefinite periods of time in the future.
I have heard that long term care insurance, especially, anything reasonably priced with decent coverage is getting harder and harder to get. It seems that when it was originally setup they didn't know how long people were actually going to live given the medical advances of today and how long many are living in nursing homes. Additionally, there are so many boomers, I think the insurance companies may be overwhelmed with the staggering numbers that may need to be served for indefinite periods of time in the future. Any other thoughts on this?
I wish that I had already known about my mother's long term health care insurance as well as where she had put my medical and durable POA. Because of not knowing where they were since 2002, we had to have them made again in 2009 right before she had a major stroke followed by breaking her hip and landing in a nursing home which my step-dad blames for her current state of dementia and not getting out of bed to learn to walk again despite PT's best efforts.
Magnum! OMG! I miss you! Thank you for posting! Yes, I had a similar situation in that when I started to prepare the plethora of paperwork for Dad's Medicaid application (anyone been through that???....exhausting!!), I didn't know he had 8 (yes, 8), different insurance policies. Some had stock attached to them. I had to sell them all and the stock. It took many, many phone calls, faxes and letters because they won't even talk to you if they don't have the POA paperwork on file. So I send it. Then send it again. Then they say, "we didn't get it," "we have no record of it." Just maddening. Anyway, getting your parent(s) or person you are caring for, paperwork in order BEFORE something happens can make life a lot easier. So everyone please heed that advice.
How lonely it is. I promised myself when I was in my 20's that no matter what, I'd do my best to be here and God made it possible. I've had to walk (or run) away from this twice in the past 5 years but I'm back again and this time I won't leave no matter what. If my brothers help so be it, my sister is to far away to be here physically, but she provides emo support. My sibs have all thanked me for being here already, a show of support and love that I never thought I'd hear. But I am lonely, isolated, no friends, no social life, but that's OK, I chose this, and I will complete it. Thank the Good Lord I found this site. It has already done so much to help me, and I hope, in some small way that my comments have helped someone else. Stand tall caregivers, you are all angels for what you are doing. Smile, be well.
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That dealing with the family is sometimes much harder than dealing with the person with Alz...
No word from them in years...no card, call or even inquire about mom.
They will come crawling out of the woodwork if she passes.
To make a caregiver's contract. Although that sounds silly to me even now.
She's my mom. I love her.
Luv to all.
-SS
The hardest thing for me to cope with has been the betrayal of my family. They have acused me of terrible things that aren't true and basically neglected me and mom. The only reason they are paying attention now is that I tried to commit suicide and they are afraid that I will hurt mom. I;ve never done anything to harm my mother, but that is their logic. Again, they don't care about me.
Thank you to everyone. Please encourage others to post their ONE thing they wish they had known.
xo
-SS
I, too, moved my mom to my city, one hour away from where we lived all our lives, and all of my parents adult lives. When dad died, my husband and I thought it would be better to have mom closer, as we knew the "emergencies" would be happening more and more frequently. So we moved her to a senior living center 20minutes away. Every week, when things are going well, she pays a limo service nearly $200 to drive her over to her old town to get her hair done and occasionally play bridge. When she wins $4 she is so excited to tell me about it. When I offered to take her over there for the same amount of $, she no, that I'm her daughter, that it should suffice she would pay me for my gas and lunch. Later, she said she would think about giving me $50. I told her no, I wasn't interested. We see her every Saturday and go out for breakfast together. Her mobility is impaired but we do alright, we just move very slowly. She is often very sweet and loving, and occasionally very cruel about physical features I have no control over. She is always helpless and lets you do anything you will for her. I have never, in my entire adult life, been able to call on her in the evening about anything. She was always inebriated. I called her my 9-5 mama. She was great during those hours, problem is that's when I was working and the kids were in school. So she wasn't of much use when I was raising my kids. But she was sweet and nice when she was lucid. It just makes me sad. I never talked about it to anyone because I felt sad, alone and embarrassed. Now I just don't really give a damn anymore. That's probably why my sibs don't get too involved either. Honestly, I often just wish it were all over instead of just dragging on and on. Thanks for letting me vent...it really helps to share with others. And best wishes to you, I know it's not easy. Just keep writing and sharing....all of you!
xo
-SS