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Medical Forum / Diseases and Disorders / Alzheimer's / September 2004Caregivers Getting Screwed Over
I've posted here before...I'm posting under a different screen name tonight so my email address won't be recognized by any involved parties who might read this group. I'm so frustrated and pissed off. I've come to realize that the biggest burden on me, the caregiver is not my mother with dementia -- who is a kind and wonderful person whom I love very much -- but the system that is supposed to be caring for her and giving me support and respite. We are told over and over as caregivers not to go it alone, to seek help from services. I seek the help and boom, it all blows up in my face. I love these organizations designed to help cognitively impaired elderly who can't handle anger and threats of aggression. What do they think Alzheimers IS? Do they know the fricking symptoms? Some home care agencies and some day care centers have caveats about how they can't be expected to deal with seniors who might act in a way that is upsetting to people or aggressive. The nearest day care center to me is an unlocked facility who won't take seniors who are bowel incontinent, who might wander, or who can't get around on their own without help. In other words, I guess they want seniors who don't actually NEED day care in their day care program. I guess the alternative is putting my mother, who is in the mild-to-moderate stage, in a dementia care facility, but I've heard of those places giving the heave ho to aggressive seniors too. Maybe we should stick them in padded cells in county psychiatric hospitals where they won't bother anybody. A social worker at a day care center told me she knows of an agency that CAN and DOES have people willing and able to deal with seniors who become aggressive. I hope this is true and that I have better luck with this one than the last. In the meantime, I got my mom's doctor new medicine to help control her angry outbursts when she feels frightened or threatened. I hope it helps. I'm just so frustrated and angry because I don't know who to trust anymore. A social worker today asked if I am carrying this alone, if I have siblings (I do, a wonderful one who helps out a lot), if I'm taking care of myself. Well, I am damn well trying. But dealing with some of these "support services" is way more stressful than dealing with my mother has ever been. Sometimes I think I'd be better off if my mom and I just went to some tropical island, laid on the beach and had beach boys bring us tequilas. > I've posted here before...I'm posting under a different screen name > tonight so [quoted text clipped - 61 lines] > laid > on the beach and had beach boys bring us tequilas. I sympathize. When it came to the point where we decided to place my mother in law in a nursing home, nobody had any help for us, we did it alone. It was a hassle, but ultimately there was only just ourselves to trust. Good luck in solving your difficulties.  SignatureRegards, Evelyn (to reply to me personally, remove 'sox") > I've posted here before...I'm posting under a different screen name tonight so > my email address won't be recognized by any involved parties who might read [quoted text clipped - 13 lines] > care centers have caveats about how they can't be expected to deal with seniors > who might act in a way that is upsetting to people or aggressive. <snip> Its tough, but then its also tough on those who have to face the anger/aggression, which migh tbe the staff or it might be the other patients.The sufferer needs to be medicated to remove the aggression, bottom line is these places dont have few enough staff to deal with normal routines let alone an agressive one. SignatureTumbleweed email replies not necessary but to contact use; tumbleweednews at hotmail dot com >Subject: Re: Caregivers Getting Screwed Over >From: "Tumbleweed" thisaccountneverread@yahoo.com >Date: 9/11/2004 12:31 PM Pacific Daylight Time >Message-id: <2qh24aFvfflcU1@uni-berlin.de> >Its tough, but then its also tough on those who have to face the >anger/aggression, which migh tbe the staff or it might be the other >patients.The sufferer needs to be medicated to remove the aggression, bottom >line is these places dont have few enough staff to deal with normal routines >let alone an agressive one. Oops, Tumbleweed, I guess I was so angry yesterday that I wasn't clear in what I was talking about. For institutions and caregivers to insist that aggressive patients be medicated so that their staff can be safe and do their job is 100% reasonable. You will not get an argument from me there. For institutions to be informed that the person could get aggressive and is not being medicated for it because the doctor is reluctant at this time, and then for that institution to state or imply that that is okay, they can deal with it, and THEN, when threatening behavior occurs, to suddenly say "good-bye forever" rather than "please get your loved one medicated" -- that is what seems unreasonable to me. > >Subject: Re: Caregivers Getting Screwed Over >>From: "Tumbleweed" thisaccountneverread@yahoo.com [quoted text clipped - 28 lines] > forever" rather than "please get your loved one medicated" -- that is what > seems unreasonable to me. I would probably agree with that. I don't know if this is typical, but the nursing home where my mother in law is, has a practice of discontinuing all medication for new patients, in the belief that by establishing a baseline for the person in an unmedicated state, they can more effectively determine the right dosages and the right medications. Seems to me if they all tend to do that, they shouldn't complain about the behavior problems that present themselves, and they ought to have an alternative plan at the ready...... not to kick the person out! SignatureRegards, Evelyn (to reply to me personally, remove 'sox") > I've posted here before...I'm posting under a different screen name tonight so > my email address won't be recognized by any involved parties who might read [quoted text clipped - 4 lines] > wonderful person whom I love very much -- but the system that is supposed to > be caring for her and giving me support and respite. This is kind of tangential, since Evan was not aggressive when I cared for him, though he had been quite belligerent to others in the past. It seemed that I was always unable to get the kind of help I needed from social service agencies, but even more importantly I failed to get the support and care of his family. I was/am criticized by his step-children, although they didn't do a single thing to help out in any way. I mean that literally. In fact they were/are critical of me even though I got him the absolute best care imaginable. His sons who would have nothing to do with him (or help me) for years are now on the scene crying crocodile tears over him. Where were they during the last years of his life when they had a chance to get reacquainted with him? Several of these people have told me "Thankyou for all you have done". I find this very patronizing, and have told them "There's no need for you to thank me...I didn't do it for *you*. Dennis >> I've posted here before...I'm posting under a different screen name > tonight so [quoted text clipped - 32 lines] > > Dennis Dennis, I can relate to what you are saying, but sometimes it is wisest to just say "thank you" back to such people. Why? Recently a person on another newsgroup made an interesting comment when someone objected to a very sweet, and very religious person who said she would pray for them. He replied to the one who objected......."could it really hurt you to have a sweet person like "D" pray for you?" I thought about that a lot. I may not share the belief systems of a lot of people but if they say they would pray for me, I just say thank you because it means their heart is touched and in the right place. I think that falls under the same category as the people who say "thank you" to you for caring for Evan. Of course you didn't do it for *them,* but when you care lovingly for a dear friend and act altruistically as you did, all people are touched and feel they need to say "thank you" since it is such a nice thing to see. Receiving their thanks graciously is probably greater proof of the real altruism of your motivation. Don't know if that makes sense to you, but it is at least something to think about. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") Evelyn, I agree with you. Being kind just heaps coals of fire on their head and leaves you free. Gwen > >> I've posted here before...I'm posting under a different screen name > > tonight so [quoted text clipped - 49 lines] > motivation. Don't know if that makes sense to you, but it is at least > something to think about. > Dennis, I can relate to what you are saying, but sometimes it is wisest to > just say "thank you" back to such people. Why? Recently a person on [quoted text clipped - 12 lines] > motivation. Don't know if that makes sense to you, but it is at least > something to think about. Oh, I certainly agree with you Evelyn. It just hit a raw nerve for me and I reacted. It will take me some time to resolve my feelings for Evan's family, who ignored him for years, and disregarded my very polite invitations and enjoiners to come see him in his later years. More importantly, though, I wanted to speak to the condition of many caregivers out there who are left in charge to care and make decisions for an LO, only to get criticised (or even patronized) by those that have not been down in the trenches. As far as praying for others, I am also in agreement. I think Miss Manners would tell us it is a breach of not only etiquette, but civility as well, to challenge someone on what is a generous, humble, and harmless offer of kindness. It doesn't matter what belief system you or I hold. It is the intent with which an offer of prayer is given. Dennis >> Dennis, I can relate to what you are saying, but sometimes it is wisest >> to [quoted text clipped - 38 lines] > > Dennis Yes, I knew you would understand :-) About Evan's family...... we are all different people to different people. To you, Evan was a special and precious friend. Not all family members feel a sense of loving connection with a relative. Your experience was all good, but we have no idea of knowing how theirs was. You can only take responsibility or concern on for YOUR loving relationships, not anyone elses. Now that Evan is gone, it is you who hold the best memories. In any case, they are more to be pitied for either not getting to know him as well, or for not being able to connect as well. My teacher always says that the only antidote for anger is compassion and that anger rots the vessel that carries it. Let your bitterness go and remember only how enriched your life was for knowing Evan. I had the same kind of thing from some of my mother in law's friends. None of them came to visit or cared about her after she was diagnosed and came to live with us. I had to realize that they were just scared or uncomfortable with the fact their friend had alzheimers and didn't any longer know how to relate to her. Meanwhile I was definitely enriched by the time I spent with her. We learned to genuinely care for one another and that has even continued now that she is in the nursing home. She is always so happy to see me, even now. I get tears in my eyes as I type this. Her friends are the losers, ultimately. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") > Yes, I knew you would understand :-) > [quoted text clipped - 9 lines] > vessel that carries it. Let your bitterness go and remember only how > enriched your life was for knowing Evan. Perhaps I overstated my concern. I wouldn't characterize it as "bitterness". simply because I learned (the hard way, of course!) that anger and bitternss only harms the individual holding it. Still, I wish Evan's family had come to see him. I know how terribly hurt he was. I took on so much in his care, that I wanted to, and still want to protect him from hurt. He was such a kind and gentle soul. I am saddened because he did nothing to deserve the treatment he got from his boys. I am left unresolved as to how to deal with it because I too was abandoned...by my father. In that respect I am amost sure a higher power brought the two of us together to give each other that which we wished for so much. > I had the same kind of thing from some of my mother in law's friends. None > of them came to visit or cared about her after she was diagnosed and came to [quoted text clipped - 5 lines] > so happy to see me, even now. I get tears in my eyes as I type this. Her > friends are the losers, ultimately. Oh, Evelyn...I do understand. Bless you. Dennis > > Dennis, I can relate to what you are saying, but sometimes it is wisest to > > just say "thank you" back to such people. Why? Recently a person on > > another newsgroup made an interesting comment when someone objected to a > > very sweet, and very religious person who said she would pray for them. > > He> replied to the one who objected......."could it really hurt you to have a > > sweet person like "D" pray for you?" I thought about that a lot. I may > > not share the belief systems of a lot of people but if they say they would > > pray for me, I just say thank you because it means their heart is touched > > and in the right place... > As far as praying for others, I am also in agreement. I think Miss > Manners would tell us it is a breach of not only etiquette, but civility as > well, to challenge someone on what is a generous, humble, and harmless offer > of kindness. It doesn't matter what belief system you or I hold. It is the > intent with which an offer of prayer is given. The 'intent' behind a statement from someone that they're praying for you is questionable. Jesus actually had some things to say about making a public statement of one's prayers (almost universally ignored by His followers). If the efficacy of prayers is believed to lie in God hearing them, then announcing to someone they're being prayed-for is unnecessary at best, and perhaps the person praying is getting all the 'reward' they were really seeking, in extracting gratitude from the person needing prayers. > The 'intent' behind a statement from someone that they're praying for you is > questionable. Jesus actually had some things to say about making a public [quoted text clipped - 3 lines] > perhaps the person praying is getting all the 'reward' they were really > seeking, in extracting gratitude from the person needing prayers. Not everyone shares your view. Dennis > > The 'intent' behind a statement from someone that they're praying for you > is [quoted text clipped - 6 lines] > > Not everyone shares your view. Well... Jesus' view, mostly, in that case (Matthew 6:5-6, and repeated in Luke, I believe). I disagree with Jesus on a number of things myself, but, like the people who do agree with him, or say they do, I feel free to say so. SignatureRobert > > > The 'intent' behind a statement from someone that they're praying for > you [quoted text clipped - 15 lines] > like the people who do agree with him, or say they do, I feel free to say > so. It seems to me more accurate IMHO to say that the above views are that of the authors of the Book of Matthew and the Book of Luke. We have no direct knowledge of what Jesus did or did not say and must rely on others, mostly those who did not live during His lifetime. As a Christian ethicist I believe the legalistic view of the Bible is trumped by what is in the heart of the individual. Ritual and Biblical etiquette leave me cold. Personally, I can find nothing to disagree with Jesus about...since I believe His word can be distilled down to the simplicity of "Love One Another". I *am* doubtful of other's interpretations and assumptions, though. Especially hypocrites and sin-sniffers (that is NOT what I am calling *you*, BTW, I understood the intent of your post, I think) I suppose if they wanted to proof-text the Bible hard enough, they could find passages telling us why it would be wrong to care for our loved ones! Respectfully, Dennis >> > > The 'intent' behind a statement from someone that they're praying for >> you [quoted text clipped - 38 lines] > Respectfully, > Dennis Hi Dennis, as a buddhist I often get into discussions about the buddhist position on this or that subject, and what is interesting is that buddhism takes the same position you describe above. It is less about hard and fast rules, thou shalts or thou shalt nots, but more about intent. Even if you do something that turns out to be harmful to another, if it was not done with that intent, there is a different result than something that was done to deliberately harm. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") >Subject: Re: Caregivers Getting Screwed Over >From: "Evelyn Ruut" mama-lionsox@hvc.rr.com [quoted text clipped - 46 lines] >Hi Dennis, as a buddhist I often get into discussions about the buddhist >position on this or that subject Evelyn I hope you don't mind my asking, but...the Buddha is not considered a "God", is he? That is what I've heard, that Buddha was a prophet whose teachings are followed, but not God. I ask because of something I heard on TV which I think was inaccurate. Thanks. ___ Re-electing Dick Cheney puts me at risk for a migraine attack. > >Subject: Re: Caregivers Getting Screwed Over >>From: "Evelyn Ruut" mama-lionsox@hvc.rr.com [quoted text clipped - 58 lines] > > I ask because of something I heard on TV which I think was inaccurate. Hi Rose, The Buddha never ever was anything but a human being who became enlightened. He did not espouse the belief in a god nor did he deny it. Buddhism deals in particular with human suffering, and the ending of suffering. By following his teachings, we are able to experience our lives in the fullest way. If you go to this link and look at the talk "Buddhism in a Nutshell" you will get a great overview. http://bodhitree.netfirms.com/ Here are a couple of links that explain the views, practices and teachings of Tibetan Buddhistm http://www.fpmt.org http://www.kagyu.org SignatureRegards, Evelyn (to reply to me personally, remove 'sox") >> > Dennis, I can relate to what you are saying, but sometimes it is wisest > to [quoted text clipped - 29 lines] > perhaps the person praying is getting all the 'reward' they were really > seeking, in extracting gratitude from the person needing prayers. Of course there can be a selfish or smug attitude behind such prayers, but sometimes it is just a way of wishing the person well too. Sometimes a cigar is just a cigar. :-) SignatureRegards, Evelyn (to reply to me personally, remove 'sox") <snip> > > The 'intent' behind a statement from someone that they're praying for you > > is questionable. Jesus actually had some things to say about making a public > > statement of one's prayers... > Of course there can be a selfish or smug attitude behind such prayers, but > sometimes it is just a way of wishing the person well too. Sometimes a > cigar is just a cigar. :-) True. And I enjoy a fine cigar, maybe three times a year (had one just last week, in fact). I make a point of not smoking them in front of others, much less blowing smoke at them. <G> SignatureRobert Evelyn wrote: > Receiving their >thanks graciously is probably greater proof of the real altruism of your >motivation. Don't know if that makes sense to you, but it is at least >something to think about. Evelyn I agree that many times the thank you is a good thing. OTOH, I don't want a thank you and a pat on the back *in lieu of* help. I'm grateful for thanks as long as the thank you is from the heart and not a way of saying "You're doing a great job, keep it up because I ain't gonna do anything." ;) ___ Re-electing Dick Cheney puts me at risk for a migraine attack. > Evelyn wrote: > [quoted text clipped - 10 lines] > "You're doing a great job, keep it up because I ain't gonna do anything." > ;) Yep, I am really very familiar with that :-) My mother in law's girlfriends were great at that, and not one of them came to see her, even when we offered to pick them up and drive them here and back home again, and offered to put them up overnight etc. I think some people are just afraid of certain kinds of illness, especially that which affects the person's reasoning abilities. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") > ___ > Re-electing Dick Cheney puts me at risk for a migraine attack. |
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