I am 68, and have a few medical issues of my own (big one of fairly recent development). I came back here 12 years ago to originally see that she was able to stay in her own home and to 'look after her'. Since then her condition has deteriorated and my role has become caregiver 24/7. Should any adult male be happy pulling down his mother's pants so that she can go to the potty?There is no family around here who can help (at least that I can even possibly count on and trust) or her friends (who are mostly either dead or as old as she is) to help, we have no church or organizational affiliations to step in, her doctor approved hospice and they have been good for her and even have some limited resources for me for brief times out of the house, otherwise it is just me. If I had to take her to a nursing home it would have to be under physical restraints. By the way, everyone compliments me on how well I care for her, even her.
The problem is that everyone from mom to relatives to the hospice nurses treat me in reality like some sort of ancient family retainer or servant or fathful hound or something and I am completely disregarded, even though they effect a sincere-sounding attitude of concern. I am not talking about some free bone occasionally with the offer of a couple hours off, I am talking about a total attitude that my entire reason for being is just to care for mom, that I should be so happy to have my "dear mother" with me still, that "warm and fuzzy".feelings about being a caregiver are supposed to be enough. I do not feel "warm and fuzzy", my mom is not the "cookie-baking grandma" that everyone thinks she is. There is no time to form any local relationships here, even if I did meet someone I like to spend time with, I do not have the time so spend. Even to keep the appointments for hospice etc., they usually want to come at a time which I can get out of the house for a few minutes. When there are no appointments I am only too glad to collapse on the sofa and take a nap! but even that is not possible some days. I am tired, my back aches, and my nerves are freyed. If I were to have the operation that it is suspected I will be needing I do not know when I could scheule in the recouperation time. I recently had a weekend visit by my nephew, her grandson who lives at a long distance and I was more like a deskclerk and short order cook than an uncle. I was happy to see him leave, and I hate that. Life has just become one dreary day after another.
For a year my Mother was lived with us. My husband and I planned a trip away for a long weekend. It was our first getaway in a couple of years because of finances. I told her the caregiver would be here overnight as we needed a break and to have some fun. She couldn't care less, as she was at that point in her dementia progression: world closing in, rediscovering belly button, as it were. She said, "Oh, then you won't be HERE. What about ME?" You do not want to know what I said under my breath, but THAT was IT!!! Within the next month, I found a place I could trust, and moved her into it. I did not visit her for 2 weeks, and she settled in and has other people she is fixated on. It's like a cat--whoever feeds it becomes its' owner. Your Mother will do the same, and probably try to make you jealous.
Listen, we are in charge of our children for a time to teach them, protect them, and hopefully, we send them out into the world not needing us. We don't let them run our lives as they are growing up, or it would ruin THEM. On the other end, now we are responsible for our elderly parents, and for some reason, they get away with that which they would NOT let us get away with! Get your life back, DT. Hugs:)
I am 66. I have been full-time caregiver for 8 years. What you are saying about only being seen as a caregiver really stikes a chord with me. Especially at the beginning, friends would say, "Take care of yourself! If you don't keep up your health you won't be able to take care of him." Wait a cotton-pickin' minute! Last year I was a friend and you'd want me to take care of myself because I am worthy of being taken care of, and now you only care about my ability to care for someone else? What happened to ME!" Even professionals would say this. It drove me nuts. It was as if I ceased to exist in my own right. I was asking one doctor to change my diabetes medication because the one I was on gave me severe episodes of low blood sugar. He was reluctant to change. I described an incident where I was in a shopping center with my husband and nearly passed out. "Oh that's right. You are a caregiver. I'd better give you something less likely to cause extreme lows." Argghh! I got what I wanted but not for my sake -- for that of the person I care for.
My situation is quite a bit different than yours, but in this one aspect, this loss of self, I can really related to you. Other caregivers in my local support group have mentioned this too.
I am caring for my husband (which I think has a different flavor than caring for a parent) and we are in our home of many years. I have some family nearby. I have my same friends (though I don't get to see them as much). I go to my same bookclub each month. I work full-time, from home, which is often a hardship, especially with recent health issues, but it is very good interact with coworkers who see me as a valuable contributor to a team effort. They know about my caregiving but it is not primarily how they think of me. At the Mayo Clinic caregivers are treated as the important part of the care team that we are, and shown respect. Even with all this going for me, I still know quite well that feeling of being regarded as a nonentity in my own right.
I say this was worst at the beginning. By now everyone who knows me knows better than to treat me that way. Strangers (mostly professionals) still do sometimes, but I generally can turn that around. I agree with Chirstina that part of the problem probably is "people are meeting your expectations according to what you project." But I also know that people have their own expectations and often have to be reeducated about what to expect from you. Changing your own expectations of how they should treat you is a necessary step, but please do not hear this as a criticism or that this is all your fault.
You can't go back and re-make the decision that brought you far from friends, or the decision to do all the care yourself, and to not work, etc. etc. You are where you are and you can only try to figure out what is best going forward.
Your mother is on hospice care, which must mean a doctor has said she is not expected to live more than a half a year or so. Of course such predictions cannot have a high accuracy rate in all cases. Do you feel that your mother is in the end stage and will not live many more months? I think that would color what I would do. You have cared for her at home for 12 years, and to place her in a facility now to die might not seem the best choice of either of you. But if the present situation is too much for you, there is no shame in acknowledging that and acting on it. Does this hospice organization have their own facility where your mom could be kept comfortable through this final part of the journey? I have heard wonderful reports of hospice houses. True, Mom might not be happy about that, but if it is the best option for her and for you, grit your teeth and do it.
It sounds like you are near the end of this long journey you have been on, one way or the other. I hope you are beginning to think about what you will do when you emerge from that long tunnel into the light you can glimpse at the end. Will you stay where you are? Is it a suitable community for you once you have time to get to know people and live your own life? Or will you sell the house and move back to your old environment? Are your old friends still there? Is the ambience there more compatiable with how you'd like to live. Will you be recieving an inheritence? How does that impact your plans? I don't expect an answer to these questions -- it is none of my business -- but I hope you are thinking ahead and building plans to look forward to.
Take care of yourself, DT, because you are a valuable, unique individual, fully worthy of the best care you can get. Again, hugs to you!
Anyway, I meant no criticism, and I sincerely wish you well as you struggle with this tough road we're on.
No, our community does not have a separate facility for hospice like some more prosperous communities, it is all home care. Not perfect, but we are working through it and so far they have been lots of help.
As for whether I will stay here or not, I have not made any particular plans on that. When I bought the house from her it was with the intention of retiring here, I love the house and I have the garden as an outside diversion, and my hobby stuff in the basement, I grew up in this town but frankly have soured on it. For some 30 years I lived in a more urban environment and I crave too much that a small community in the middle of a sea of corn cannot provide in order to be totally content here, though much will depend on whether the real estate values recover, in this area they are rock-bottom and better homes than mine are going unsold so I may never be able to get away. All I have to say on that is that as long as I am mobile at all, there are many places in this world I want to visit, I would move back to CA if I have the chance but as I said, no plans at all. For one, because she keeps making these rallys, I have no idea how long my responsability will last (Ah! The big "R" word!...)
When I used the word "disown", I was in no way referring to disinheritance of finances. The word "renounce" is closer. You want more constructive ideas? I bet you have endless thoughts as to what you need to do for your Mother and still have a life. Have you ever presented the situation to Mother, herself?
From one caregiver to another, it is not necessary to state the obvious: you would not abandon her, you are not cold--most of us are too caring, especially those of us with self-centered parents. We develop our coping styles over the years to survive, and our personalities determine the presentation. I come from a screwed up background, DT. I am sorry if I offended you with my brusque delivery of bottom line advice.
Provincial minds are everywhere, and we cringe at worn out cliches and well-intentioned but ignorant remarks from outsiders. I have heard a few this last year, and if the reaction I gave let them think I was cold-hearted, I don't care. I know what I experience, and they can mind their own business next time.
I would like to have a better attitude about what I am doing: i.e. being the sole caregiver for my Mother without constantly griping that my siblings do nothing; and resenting that they resent my resentment of them! I am actually tired of hearing it after a year or so, and I know God is tired of hearing it. I struggle with this: if I am serving others--like caring for my Mother--does having a bad attitude about it negate the good? If I simply accept that this is the task I must accomplish and there is no one else available or willing to do it, then I prevent more angst.
I believe there is an answer for each of our circumstances, and sometimes it is 'acceptance.' Sometimes when we accept and relax, another opportunity presents itself. When you stop chasing the butterfly, it will light on your shoulder.
I don't know. I think tossing these things around and then giving it a rest is the way to find an answer. I'm really glad we have this site and each other to bounce things off of. All the best to you, DT. Hugs, Christina
And Yes DT...my mom never was a "friend maker" ..a loner you would say. I love her dearly and don't regret a moment of this journey....but yes I do have many "pitty parties" that rollercoast from crying jags to wanting to put my fist thru a wall to the only other way I know how to deal ...which is step outside and talk to my Lord . That is the only way I can re-focus. Each day gets harder watching her spiral away and it's only a matter of time...she may not even make her 87th birthday next month. I am exhauseted as you probably are as well..physically and mentally but somehow God gives me the strength to lift her and take care of her everyday needs. GOD BLESS YOU ALL.
I know your situation all too well, except that I'm 25 years your junior. My identity's been co-opted from college English instructor to full-time caregiver. Far too often, in my mind I've constructed the articulate letter to my 84-year-old father where I explain that I've merited some regard and some respect, more than I've received these last 12 months which is Zilch (with a capital Z). It seems like it's only expected that I've pressed life's Pause Button and should be giddy living in the tiny quarters that have been afforded to me. I should be thankful for the opportunity to experience these last chapters.
I've got that letter fairly well constructed. I just need to hand it over. In it I ask my father to recollect his life and what he had to offer the world when he was my age, except that I never married nor am I saddled with any children of my own. I'm just supposed to live this isolated cult of an existence?, I ask. DT, you and I and every other person who's on this site, were not put on this earth to sacrifice our lives so that our elderly parents can have it their way until the very end. My logic to my father is "I'm your adult son. I'm trying to improve your quality of life. But when is someone going to take into account MY quality of life? Who is going to look after me when I'm in my 70s, 80s? I have no kids, and this dreary existence that my father's purposefully created (that I may've enabled; I accept that) is anti-thetical to introducing any chance of Love, Romance, and a shared life."
I've put an agreement in writing between my father and I. Having a written document accomplishes a number of things. One, he can reference when he needs to. Two, I'm able to completely present my perspective. He's got age-related hearing loss, so too often he misses a lot of what I say. And, like most people, after hearing Point One, in his mind he'll start to formulate his retort and miss the rest of what I'm trying to say. Three, by putting it in writing, we avoid the exchange devolving into a counter-productive argument where we laundry-list all of what we think we've done for the other ("well, you're saving money on rent because I'm allowing you to live with me" would be his first response).
Because of his end-stage COPD, I've agreed to move us to a lower altitude. But prior to that move taking place, he'll get that letter where I detail what sort of patterns have happened and which will no longer be acceptable. If I am going to continue to adjust my life, he's capable of adjusting his. I'm calling bullshit on the whole Old Dogs, New Tricks thesis. I will offer to accommodate WITHIN REASON. When his expectations or behaviors become unreasonable he will get the subtle reminder that he'll either while these last days on his alone and on his own or in the an assisted care facility. His finances ain't going to allow for a whole beyond the VA hospital, so I anticipate he'll have no other choice than to be reasonable as he's deathly afraid of the Old Folks Home dynamic.
Present it writing to your mother, DT. Explain that there's no other bond like the one between mother and child, that inherently it's hard-wired for you to do your best to look after her, but that your care-giving will only stay within the bounds of reason. Explain to her that you're not going to die when she dies, that you have a future of your very own. Explain that you're not going to wait for her to die to begin enjoying your life. Explain that everyone dies, including her. Explain that her expectations are unrealistic and not reasonable. Either she can change or, if she doesn't, you've done your part (multiplied by a thousand) and you have a lot of life to live. Either she can get along with you swimmingly or not. And "not" means you're no longer going to be in her life.
I genuinely wish you well. You deserve a life of your own. As do I.
Somehow I can't see that clarifying roles with his mother, either in writing or in conversation, at this late date is going to significantly change how the hospice staff, or his nephew, or the ladies in the community treat him. He is near the end of the journey. Mom is on hospice. After caring for her in increasingly demanding ways for 12 years, now that she is dying I can't really see him saying, "This is how you have to treat me or else I'm moving out." Huh? Doesn't make sense to me. Setting boundaries early in the caregiving relationship (to the extent that the loved one can comprehend and comply with them) is one thing. Threatening to withdraw the caregiving of a dying parent just makes me shudder.
Yes, we all need to take care of ourselves, and stand up for ourselves, and be proactive in our own physical and mental health, etc. etc. Somehow I just don't think the message DT needs to hear right now is to man up or stand up for himself or to write an essay for his unimaginative mother. Those messages might indeed be appropriate for other caregivers in somewhat different circumstances.
DT, I think that it is a verifable fact that releatives, professionals, acquaintences, and even strangers focus so much on the needs of the loved one that the caregiver seems to be invisible, or a nonentity, or some kind of servant. DT, you do not deserve that treatment! (And, of course, your mother does not deserve to be in state of poor health that she is in.) There is a lot in the caregiving situation that isn't "fair."
You have none a wonderful service for your mother for many years. I know you will continure to do the best you can for her to the very end. Let me tell you that you are a hero, NOT a nonentity. You know it and we on this board know it. I'm sorry that you have been encountering a lot of people who don't seem to know it, or who are too preoccupied with their tasks to think about acting like they know it.
Keep on keepin' on, in love. This isn't going to last forever.
As I read your post, I kept thinking of onions and icebergs; and trying to focus on what's underneath the surface. On this site, there's a lot more going on than what people are telling about their lives as caregivers. A few times I've had to take the foot out of my mouth for being so free an easy with the advice. After all, I'm not there to see what you and many others here are really going through. With my words, I try to paint pictures of my world; but at the same time, as I read every post, I try to picture what yours is like. Sometimes I laugh; sometimes my heart feels like it's shrinking, and try as I may not to get emotional those cleansing tears always get their way. ... Sometimes I'm amazed at the resilience of people for whom, like you, surrender is never an option.
Yesterday, during a case conference, I presented John Doe's chart. I reminded the staff that the chart is not the person and stated that I wished he were there to take part in the decision-making that might fundamentally impact his life if he decides to remain a client. AIDS, Hep. C, schizophrenia, incarcerated 1/2 his life, no family, no support system, victim of repeated rapes while in prison. To top it all off, a vicious addition to Ketamine and "Speedballs" (a mixture of heroin & cocaine).
Instead of focusing on how to help this individual, they zeroed in on what I was not doing to help him even though every service I've provided is documented and followed up on. "Maybe you've bitten more than you can chew," "You should do this, you should do that," "Why didn't you come to me for help," etc., etc.. There was a male colleague who indirectly told me I wasn't man enough for the job. I reminded them ours is a methadone clinic, and that it was clear this client needed a higher level of care. Someone said I just wanted the easy way out.
I picked up the chart from the table and put it in the hands of every counselor who didn't think I'm doing the best I can with this client. All I said was "I'm looking for volunteers. Anyone who thinks s/he can do a better job is more than welcome to this case." No one wanted to take it, yet kept shooting their flytraps; this time with "It's not what you said but how you said it," blah, blah, blah.
For about 5 minutes after that, the only sound was their breathing. They kept looking at me as if expecting me to say something else they could pounce on. "Next time you have the audacity to criticize my work, be ready to walk a mile in my shoes. The farthest you're going to get is 1/2 a block. Maybe."
Somebody whispered "Arrogant" from the back of the room. I looked at her and asked if she wanted to ask a question. She said no. I closed with "One thing I don't do is celebrate mediocrity, so what you might call arrogance I call confidence. My clients are the purpose of my day, and that's all that matters. ... Now, does anyone have any suggestions about how to help this man reclaim his life?"
No cigar.
Eddie - I would like to hope I am, in your word - resilient - but I am just putting one foot ahead of the other. Great story about your - class(?) - to be able to walk in another's shoes is one of those imagination things I was speaking of earlier. Sometimes it is a learned talent, sometimes the need is never even recognized. One of my favorite things to say is that you can teach a lot of people a lot of things, but the one thing you really can't teach is common sense. Some in your class have a lot to learn aobut life.
Girl, don't you dare leave me! ... We just met.
Anyway, if I had a quarter for every well-intentioned comment that was thrown back at me I wouldn't need a Xmas club account right now. And If the AgingCare Experts don't have all the answers, neither do we. Because there isn't -- and never will be -- a cookie-cutter formula for caregiving. So we take what we want to get what we need, make it our own, and keep on rocking. Our personal philosophies of caregiving are works in progress in constant need of fine-tuning and refinement.
I'm a businessman of hope in the pursuit of the wisdom it takes to be a better caregiver, a better man, a better person, and a better human being. ... And I won't be able to do that if I hole up every time someone doesn't like what I say.
So please, hang around.