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When I was on a vent to someone I know but don't know terribly well I suddenly realised how clueless they actually were....she said well you have it easy really your Mum is no bother is she - you can't have much to do, just wiping a bottom doesn't take long!.
Well I didn't blow a gasket I just explained to her that wiping a bottom was the easy bit ensuring all the other parts of the genitalia were clean and creamed with a cream that has to be rubbed in was not so easy especially when you have to lay the person on the bed carefully wash and dry the area and then apply the barrier cream and this PERSON is YOUR MUM. Sorry to be so graphic but her face was a picture ....I thought she was going to throw up. She hadn't considered incontinence at all or the effect it has on very tender very fragile flesh.
The she started asking more questions. I suspect that when the time comes she wont care give but like many of you sensible ones has cared and ensured that professionals do the job!!!!!
I now lock the wheelchair and go in and ask for help - it hasn't been refused yet - I suspect the look on my face says - make my day - just try and say no here!
I am no grand campaigner for rights for the elderly - I still believe in assisted suicide and I still believe in euthanasia FOR ME not for anyone else. But that said if you want to live then you have the basic human right to have people support that not hinder it by creating steps where ramps would do and those stupid lipped doors that look flat till you nearly tip someone out of the wheelchair when you realise they aren't. Sidewalks / pavements that have broken slabs in them so you can't function safely. Car parks that have shingle on them - ever tried pushing a chair over that!
When the counter is to high for them to even see the person in the wheelchair, when people talk to you and ask you how the person in the chair is I always say - ask her - she isn't deaf and she can speak - they might not get a coherent answer but they will get an answer.
There are an infinite number of examples all of which we face as caregivers but lets not give up people lets keep on and on chipping away - oh by the way I forgot chipping away was a caregiving job too!!!!!!!
This site has been a godsend t to my mental health and what I'm going through with my mother (93). Her physical health is great (no meds) but her mental health is shot. I'm her only contact and she fights me on everything. She is committed to die in her house. Everytime a crisis occurs its my fault. We have no relationship anymore.
I look in the mirror or at my husband every day; yes every day and beg that I don't want to be this way or live like mom. I tell anyone who will listen (including my children - though they dismiss and dont' want to hear it) to please put me in residential care whether I want it or not and do it sooner than later -- at the first sign of craziness. My husband and I both have longterm care. My husband's a saint; because mom has made the last 4 yrs of our life hell and sucked most of the joy for doing things or experiencing joy awful. I resent her. I resent my brother for not helping. I'm jealous of friends who's parents go to residential care or accept care in their home. I dislike myself for feeling this way and feeling like an uncaring daughter (which I have to hide and put on a good face to family and friends).
I wish there were a pharma cocktail that you could get from the doctor and put yourself out of your own misery "at your choosing". I pray that "die with dignity" orr "right to die" becomes law in every state and you and your dr/family can make those loving decisions in the end without fear, stigma or legal repercussion."
I resent this burden I feel with worrying about my mom everyday, every time the phone rings, and the next shoe to drop. My parents wrote a DPOA that is impossible to enforce because it requires a doctor to write incompetency and there are absolutely no doctors willing to do it; they pass it off to a psyche eval which mom refuses. She had a stroke and I still couldn't get a psyche evaluation. The med system is a mess for elders. Their only job is to stabilize (with a bunch of pills) and discharge them as quickly as possible so the elder doesn't die "on their watch" and cause a "ding" on the hospital record.
Lets all live a full, loving, joyful life.
I'm so sorry to hear of the decline in your mother's mind. The "committed to die in her own house" was my mother's thought, too, though her mind was okay-her body, not so much! For the last part of her life as she demanded to live alone in her own home, that left me no choice but to leave my life and home and move in with her 400 miles away! Are you sure you're not me? OMG...the brother who didn't/doesn't help sounds identical to my situation. I tell my daughter that I won't be/I refuse to be such a problem as I age! My mother said "I'm so glad I stayed in my own home." I said "well, I'm not and now you've lost your ability to choose"...she didn't like me moving in with her....well, too bad because my late mother was legally blind, had CHF, A-fib, macular degeneration, incontinence, loss of hearing, olfactory and vision sense, loss of bowel control and blood pressure of 60 over 40...so "I can't have you living alone," I told her! Love your pharma cocktail idea and I know and am sorry that your mother is putting you through this! DO NOT beat yourself up over it...you're doing a miraculous job, even though I wish you didn't have to go through this. Love your comments about elder care...or the lack there of, rather! My late mother was in the rehab unit of an NH...they had a family meeting (my brother had finally arrived for his 7 day stint; I had already been there for 6 months) and they said to my mother "maam, you're too well to stay here." They got it wrong...dead wrong, literally...less than 48 hrs later at the NH my late mother had a stroke there! She later deceased at the hospital. Come back on here to unburden, please Sunflo, any time.
Often someone, usually a daughter, leaves her job, thinking she'll return in a couple of years. It doesn't go like that anymore. People now can live 10-20 years with such poor health that they can't care for themselves. But still they want to be home with family caring for them.
The future will probably be different for caregiving because people will not be so rooted in past traditions. The main question will be how to prepare enough facilities that don't cost so much. It would be kind of cool if there were elder villages here and there, providing that they didn't cost an arm and leg to live there. Getting old in the US cost more than many or most people can afford.
My wife and I have yet to choose who is going to be our medical and durable POA. However, I do find myself planning my own funeral, i.e. songs plus some things that I don't want said during my funeral service and some things I want on my grave site which is already purchased. Sort of morbid to be planning your own funeral at 59, but I am.
I think my experience with my mother and now with my dad has motivated my sons to wonder what we want down through the years; where important information is like in the safety deposit boxes that we have already given them the right of access to. I've told them which safety deposit box the deeds to our cemetery plots are, where my term life insurance policy is; and where our wills are on file plus where the keys for the safety deposit boxes are. I will give them other important information about our various accounts, credit cards, automatic payments of various monthly bills which will require them having my master password to everything that I have in a secure place.
My wife and I got a late start in marriage and having children. Thus, ours are about to finish graduate school. My dad married a bit late as well, but he was still working when I finished graduate school and not on disability like I am. I doubt that my wife and I will be as well off in old age as them, but we should be ok. We are soon going to get joint long term care insurance.
One thing being mom's advocate, medical and durable POA motivated me to do was deal with some family of origin issues. This has been true with dad's decline too, but not like with my mother's.
I am a college grad and former teacher.
I am a widowed business owner and employ 31 people.
Believe me I know hard work and commitment.
I am a devoted Christian.
I love my country.
I am proudly voting for Donald Trump.
Please.............don't buy into media who create their own reality from sound bites - media who characterize Trump supporters as uneducated fools.
Sorry folks - they are so wrong.
But that has all changed for me now. For the past 13 years, my husband's Dad has lived with us and he is a Narcissist. I knew nothing about this, as it was well cover up in the years prior to his coming to live with us. My husband comes from a very dysfunctional family, and I never knew that his 2 siblings would Never step up and help us out, even once and awhile. It took me until coming onto this websitea few years ago, to learn exactly what Narcissistic disorder really is, and why his brother and sister are the way they are. After living through the terrible childhood they endured, I wouldn't step up either. Still and probably because, the've both had been pretty shitty to their parents over the years, and I have never respected nor liked his sibings, and yet somehow my husband escaped becoming cold and callous like they both are, probably because he was the baby and somewhat protected by his Mother, most certainly he was the favored child, the athlete, the golden boy, but even he knew how dysfunctional his family was, but it took until his Dad came to live with us, to put a name to it. Nevertheless, he stuck by his parents, and was a good Son to them over the years.
His Narcissistic father started "grooming" us in the years leading up to his wife's passing. He would Often say, "if anything ever happens to Mother, can I come and live with you?", and of course we said Yes, I mean, what else are you supposed to say, when you understand that your Dad is afraid of living alone, has never really lived alone in his whole life, going from his own parents home into the Navy at 17, right into marrying an older woman with a child, yes, never alone. Caring for our elders was certainly what I was accustom to, and it seemed appropriate at the time.
Now fast forward 13 years of having him in our home, figuring out the puzzle of how this family is so messed up, it didn't take long to learn that the Old Man was behind the dysfunction! Seeing him try to manipulate my husband with money (obligation, fear) and the "what's to become of me, I'm all alone" (guilt), and he's never truly been alone because we've seen to it that he hasn't, not for the 31 years that I've been in this family anyways! We've never frozen him out of our lives as his other 2 kids have, he didn't need to hijack our lives at 43 and 46, just as our youngest was leaving the nest. We never would have abandoned him, but he tried to make it seem like that would happen.
Now that he has tainted my way of how I view him, my feelings for him have changed. I no longer respect him as I once did, and that makes caring for him in our home any longer, continuing to give up oyr lives and our own future is no longer an option for us, not just me, my husband feels this way too, and more so. I have figured out the bigger picture of how he has manipulated our lives, and it's time we change, because he never will.
We are taking back our future, not in any vengeful way, because we will always be there for him, and advocate for him, but we've aged in this 13 year scenario too! My husband has some major back issues and was medically retired from an on the job injury, so is now on a pension. I myself have really bad arthritis and can no longer work. If we don't reclaim what is left of our healthiest years, we may never get to travel, and enjoy our own retirement, as he and his wife so richly did, in part, thanks to my husband and I. My husband helped his parents stay in their home long after he could no longer do the care and maintenance, and now my husband finds himself in the exact same situation, but with his 86 year old Dad living with him! He moved his parents to a nearby apartment, so that they would be close to us, and we spent a lot of time with them. We saw to it that the children spent time with and enjoyed their Grandparents on both sides.
Living with a Narcissist in your home really opens your eyes to all of the little things that add up from the past, and I can see exactly what he did, worming his way into our home when he was perfectly capable of learning to live on his own, with us nearby. We're taking our life back, and will find him suitable housing near us, and we will All get on with our lives in the capacity of which we choose.
I am so glad that you and your mate are taking your lives back and finding other arrangements for your FIL. Kudos to you!
I too am fighting not to end up like my mother, but my fight at this point involves mostly diet and exercise. Serious exercise that builds muscle and improves balance and stamina, at least an hour per day. I don't have adult children to wait on me and ferry me around, but even if I did I wouldn't put this on them. It is too much to ask someone to put their plans and goals on hold because you can't get in and out of a grocery store on your own steam. I totally hear you, Sunflo, about resenting your mother and your siblings that don't help. I resent my mother for putting me in this position. She would say "Well, I couldn't help getting old." but the truth is she could have done a lot more to remain self-sufficient than she did. And I should not have had to sacrifice my golden years to make hers more manageable.
That being said, I don't regret what I've done and am doing - I doubt that I would have made other choices. So it's a puzzle. But times change and situations change. We who've devoted ourselves to caregiving know what it takes and we want the best for our kids. I think that most of us know that providing constant care for us is not in their best interest. This is a great discussion!
Carol
After 17 years of "looking" after my wife's mother I've come to a few conclusions.
(1) Parents should not put any of their children in this position. Parents should make plans for old age, parents and society should teach this to the young. I don't want my son to EVER be in the position my wife and I are in with her mother.
(2) Modern medicine is letting people live longer but not necessarily with a good quality of life. Having a doctor suggest an 86 year old could start driving again has us baffled.
(3) If we had it to do over again we would get professionals involved very early on.
As for aging, still a proponent for Assisted Suicide especially if the alternative is a NH,AL.
In practicality, I can't believe that the plan of assisted suicide generally works out anyway. I think by the time the aging person decides that there's no point going on, they may have already lost the physical or mental capacity to make the decision and carry it out. Unless someone has a terminal diagnosis or is in intractable pain, I think they tend to believe they can get better or at least that they won't get any worse. Very few people want to check out while they still have a decent quality of life, even if that quality of life is being furnished by the sacrifice of their loved ones.
Those are valid points, but what happens to the older person that either has no kids or has outlived their relatives? AS, should just be an option or choice, not necessarily the loved one would go through with it. AS, in a weird way, beats the older person living in a state of continuing decline, both mental and physical.