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plum
United Kingdom
641 Posts |
 Posted - 05/11/2013 : 12:36:47
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I've never cross-pollinated on the forums before but I shall post this on both tmshelp and wiki. I have no idea how many carers post or read but am absolutely convinced they carry a heavy, heavy load.
Folk at tmshelp are already aware I care for my husband who was devastatingly diagnosed with young-onset Parkinson's disease almost 5 years ago. Carers really are hidden, neglected, forgotten.
The following is from MSM and I am re-posting rather than linking should the link fall off the cliffs of time.
Carers 'facing depression risk'.
Carers should be routinely screened for depression and mental health problems, doctors' leaders say. The Royal College of General Practitioners (RCGP) warned that carers often "neglect" their own healthcare, and found that around 40% experience depression or psychological problems. Holding routine appointments and maintaining a carers' register within GP practices could solve the "hidden" problem and prevent the £119 billion carers save the public purse being lost, the RCGP added. Dr Clare Gerada, RCGP chairman, said: "Carers often neglect their own healthcare needs and in many cases it is only a matter of time before they themselves become ill. "They are at risk physically and emotionally with stress-related illnesses but it can be hard for them to admit that they are struggling."
She told BBC Breakfast: "Unfortunately at the moment as with the rest of the health service, GPs are heaving under the workload and what this report is saying is that we have to target resources where they are most needed and they are most needed with carers. "There are serious problems going on at the moment across the whole of the NHS but in particular in general practice, but what we mustn't do is forget the hidden group of those that need most care which carers are most certainly part of." Dr Gerada said that the UK's seven million carers are a "critical asset" which need investment as "they already save the public purse £119 billion a year". She said: "If carers fall ill you lose two patients. You lose the person they are caring for and also the carer so it makes financial sense to keep carers well." The RCGP has drawn up a nine point checklist as part of new online guidance which also includes appointing a carers "champion" in all GP surgeries, and carrying out audits to measure improvements in carer support.
I receive just shy of £60 a week for full time care. No one has ever bothered to discuss my husband's illness with me, no one has ever asked how I'm coping. About three years ago I began tests for fibromyalgia but pulled the plug on discovering Sarno. My doctor, who knew about my situation, told me to take painkillers and basically go away.
Who cares for the carers? |
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pan
United Kingdom
173 Posts |
Posted - 05/11/2013 : 12:48:48
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It is nothing short of scandalous the way family members are automatically slotted into the role of primary carer due to to total lack of finance within the UK health service. A huge chasm of care is covered by untrained and often ill family members caring for a relative.
My mother cared for my stepfather whilst he suffered from cancer...she loved him and would have done anything for him, which she did but this all took a huge toll on her and she basically put her own health on hold whilst she was caring for him.
When my step father died my mother was clearly suffering from stress and depression which was totally due to the demands the caring had placed on her. My mother started feeling worse and worse and within 2 years was dead herself from lung cancer. She was a non smoker who 5 years previously could knock out a half marathon at a good time.
My mothers story is literally word word the same as that of Christopher Reaves wife who also died shortly after he died from lung cancer after having cared for her husband.
I am in zero doubt my mothers cancer was the physical manifestation of the grief and depression caused by the loss of her husband but the previous years stress, anxiety and basically being left to her own devices by the medical community ensured an ideal breeding ground for that cancer to take hold.
Wake me up with your amphetamine blast
Take me by the collar and throw me out into the world
Rock me gently & send me dreaming of something tender
I was brought here to pay homage to the beat surrender
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plum
United Kingdom
641 Posts |
Posted - 05/11/2013 : 13:11:46
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Pan, lovely to hear from you. I have thought about how you may be getting on.
I'm so sorry to read the details of your experience. I remember you touched on it before but the intimacy of it is heartbreaking. Dana Reeve's story had me in tears, I think SteveO mentions it in his book too. I only wish it were unusual.
My mum cared for both her mother and then older sister until both died. Her health was decimated. Today she is decidedly fragile and I do my best to look after her too but ultimately the load is too heavy to shoulder and unless you've known it, precious few truly understand.
Bless you for responding. I was expecting nothing.
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MatthewNJ
USA
691 Posts |
Posted - 05/11/2013 : 15:16:38
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Plum,
I have to say after about 10 years activity in the TMS community it never ceases to amaze me the number of folks who are care givers. Bravo to you for the care you give your husband. I was a paramedic for 15 years and have cared for many. But as stressful as that was it wasn't family. In the last 3 years I have had some experience in this in that both my parents (age 86 and age 90) have had major surgical events. That said, the care I needed to provide was short term. this left me with increased TMS symptoms for many reasons. I can not begin to fathom what someone like yourself goes through.
My thoughts and prayers go to you and all care givers.
Love and Light
Matthew
Ferretsx3@comcast.net
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Less activated, more regulated and more resilient. |
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plum
United Kingdom
641 Posts |
Posted - 05/11/2013 : 16:37:59
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Matthew, God Bless You for your beautiful words. I do appreciate them. I'd also thank you for highlighting a key element; there is no downtime, no time out or away. This can make finding, never mind holding a healthy perspective pretty challenging.
I made a comment in response to this post on the wiki, which I'll briefly reiterate here. While I applaud the recognition, I do find the implications of medical interference quite sinister. If nothing else it speaks of the medicalisation of care, which will doubtless be treated allopathically. How utterly horrific could the consequences of that be?
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NextAdventure
USA
57 Posts |
Posted - 05/11/2013 : 16:40:07
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| I am the 'Sandwich Generation" kids in college and parents in diapers. Fortunately I have enough money to hire people so I can just love them and not wipe rear ends |
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plum
United Kingdom
641 Posts |
Posted - 05/11/2013 : 16:50:01
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quote:
Originally posted by NextAdventure
I am the 'Sandwich Generation" kids in college and parents in diapers. Fortunately I have enough money to hire people so I can just love them and not wipe rear ends
Fair play.
Wonder how you'd really feel if it were your wife. |
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pspa123
672 Posts |
Posted - 05/11/2013 : 17:47:11
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| For 24 years now my wife and I (mostly she) have been caring for our severely autistic son with multiple issues. In some ways it can be extraordinarily difficult, in other ways it just becomes who you are and you do the best you can and go on living. |
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plum
United Kingdom
641 Posts |
Posted - 05/12/2013 : 03:38:47
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pspa123, yes love. Caring is simply a thread in the fabric of your day. It can also be extraordinarily beautiful. There are times of deep love and nurturing, of seeing another bloom in your safe hands. This is rewarding. It really is a case of taking the rough with the smooth, there are big highs and big lows. Sometimes it really is a matter of life and death, and many carers are learning on the hoof. We care. We cope. We have to.
That it becomes part of your identity is interesting too. Invisible angels. Again some aspects are gorgeous, others wretched. Caring is decidedly in the shadows, preferably something to throw money at and make go away. A fertile ground for tms to be sure. I'm not knocking the hiring of help but am rather pointing out that it's great when it's an option and it's possibly only that with more emotionally distant relationships. When it's your spouse or child, farming them out has less appeal. |
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pspa123
672 Posts |
Posted - 05/12/2013 : 08:13:09
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| One challenge certainly has been to be able to relate to people with more normal lives. There is a great line I read that unfortunately resonates too much: Damaged people have no pity, they know they can survive. |
Edited by - pspa123 on 05/12/2013 08:13:39 |
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RageSootheRatio
Canada
430 Posts |
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plum
United Kingdom
641 Posts |
Posted - 05/12/2013 : 10:47:31
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pspa123, cutting but true. Both my compassion and tolerance have taken a nosedive.
I completely get what you're saying.
RSR, Thanking you for the links, (I shall recline and read fully), and for your care. It means the world to me. I do hope you're caring for yourself too, and those are not empty words.
I think you raise a great point and it highlights the true invisible and assumptive nature of care. Bless you for your kindness. I'm really ok. I've been out for a lovely meal and now have some precious alone-time.
Bruce, over at the wiki, posted this link for me. It's brilliant. It's Gabor Maté discussing caregivers and the emotional/psychological dynamic behind ill-health but by extension it will apply to many tms sufferers. I'd urge people to watch. His message is vital.
http://www.tmswiki.org/forum/media/dr-gabor-mat%C3%A9-how-stress-can-cause-disease.39/ |
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njoy
Canada
188 Posts |
Posted - 05/12/2013 : 11:35:29
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I have thought about this topic quite a bit and long ago reached the conclusion that not everyone is cut out to be a caregiver. I think this is more than just a cop out based on having no natural inclination to give care to sick people. I truly am no good at it which is bad enough but I also can't repress the rage I feel.
On the other hand, give me a houseful of teenagers and I'm the proverbial pig in sh*t.
So, my question is: why can't we all do what we are good at and naturally love? I'll take your impossible teens and you look after my husband when he gets Alzeimher's. I have a dear friend who says she will do just that. Before retiring she was the "team leader" on a ward with 40 advanced dementia patients. She absolutely loved it.
Of course, she got to go home after a shift. That's a given.
*****
"It's worth considering that tms is not a treatment but rather an unfolding of the self, and a way of living as an emotionally aware and engaged soul." Plum |
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plum
United Kingdom
641 Posts |
Posted - 05/12/2013 : 14:09:02
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njoy, it's not a cop out at all. It sounds like good sense to me. I realised long ago that I possessed no real maternal feelings or urges so I chose not to have kids. I love other people's and especially love handing them back. It would have been insanity to deny this.
Interestingly though I do have a profoundly nurturing aspect, something that has deepened and matured as I've aged. It's not the care per se but rather the idiocy with which I flung myself into the role.
Wouldn't the world be a happier place if we did what we loved and were good at?
Back2-it, thanks for sharing your personal experience. I appreciate it a lot. As you describe, caring is often thrust upon you in some sense or another. I can also identify with the heroic element, a strong thread of this justifies much.
I really thank you for mentioning limits. Gabor Maté specifically addresses this. I'm glad I posted about this because the advice and support has been invaluable. I feel a greater sense of clarity than I've known in a long time. |
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gigalos
Netherlands
310 Posts |
Posted - 05/12/2013 : 14:15:57
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Sidenote
As families tend to get smaller and smaller in the western world, there are less people in a family to bear the care for the members in need. Could this be a factor too why TMS is more common in the western world?
back to the subject
I recognize the anger for having to take care of a person that largely was responsible himself for becoming ill... my father (smoking cigars with four broken ribs resulting in a pneumonia). The doctor gave my mother relaxants to cope with the stress, but she wasn't able to draw the line of taking care anymore and my father kept refusing to go the hospital. She was going downhill more every day until I decided it was enough and urged the doctor to hospitalize him. I remember being in tears until he finally reached for his phone and called the hospital. I still remember the sigh of relief when the ambulance drove off with him. I forgive and let go easily... both my father and the doctor..
sorry to hear about your experience b2it, I think you are right about setting limits, but in some cases it is very difficult as there are no other options for people.
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RageSootheRatio
Canada
430 Posts |
Posted - 05/12/2013 : 22:38:52
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quote:
Bruce, over at the wiki, posted this link for me. It's brilliant. It's Gabor Maté discussing caregivers and the emotional/psychological dynamic behind ill-health but by extension it will apply to many tms sufferers. I'd urge people to watch. His message is vital.
http://www.tmswiki.org/forum/media/dr-gabor-mat%C3%A9-how-stress-can-cause-disease.39/
WHOA, Plum !
I have only listened to the first 38 minutes of this for the first time and WOW is this ever extremely extremely powerful stuff. Kind of mind-blowing for me. thanks for sharing.
RSR |
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plum
United Kingdom
641 Posts |
Posted - 05/13/2013 : 15:05:59
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RSR, that was pretty much my response. I watched a couple of short, random videos of him on youtube last night, and again the same penetrating insight and compassion was in evidence. An amazing man. So glad you watched it.
I read the articles you posted too. There was much there, both in the body of the piece and comments, for any carer. Thanks for being so supportive this weekend. I really feel much better this evening. Sending love x |
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plum
United Kingdom
641 Posts |
Posted - 05/13/2013 : 16:02:35
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Gigalos, sweetheart, I am always touched by the warmth with which you speak of your mother. This is a tender insight and I thank you for it. A similar situation played out in my extended family where, as you did, someone picked up the phone and bravely made the call. The relief was palpable.
I have huge respect for the way you extend love and forgiveness to both your father and the doctor. This is food for thought. Only recently have I softened towards my boy's consultant. I've been pretty angry at the nocebo he wrapped up in the diagnosis and the horrific problems we've endured due to rare side-effects of the medication. Forgiveness and letting go... there are so many layers to this. And as RSR points out, often PTSD is a factor too.
Finally I think your sidenote has much merit and Gabor Maté touches on this in the talk I link to. |
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RageSootheRatio
Canada
430 Posts |
Posted - 05/14/2013 : 11:06:39
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Hi Plum,
I'm still a little speechless about that video. (http://www.tmswiki.org/forum/media/dr-gabor-mat%C3%A9-how-stress-can-cause-disease.39/) I too, watched some other random ones of his on YouTube as you did ! but none that quite matched the power of that first one you posted. I was also rather shocked by his comments about Terry Fox, who is so much revered here as a national hero, that to say ANYTHING even SLIGHTLY "negative" about Terry is sacrilegious. I still remember where I was when Terry announced he had to quit his cross-country run to raise money for cancer due to the cancer returning. The power and sadness of that moment is still palpable and it completely swamped ANY inkling that perhaps the sheer stress of his goal could have been a contributing factor to the recurrence. HMMmm.
I was struck by Mate's assertion that the two main emotional "drives" are attachment and authenticity. I am familiar with both concepts, but first time I've ever heard them framed together in that way. Made a LOT of sense to me.
I was also blown away by his "demonstration" with the volunteer from the audience, showing "healthy anger" and explaining it as maintaining one's boundaries ... to 'invite' the nurturing, healthful IN, while repelling the invasive. His example using the "chair" as one's life ('you can do anything, but the rule is you can't leave the chair') was rather compelling.
His example of the woman who was unable to say the word "no" was also attention-getting. As was his example of the woman who was preparing the large meal for her brother and other members of the family, but which she was not planning to attend herself, (because the brother didn't like her, and she didn't consider herself part of the family.) The "migraine" I had in the middle of the party I was hosting, was rather well explained I thought (!)
AND his 'advice' about what to do when one had a symptom .... to ask "what am I not saying 'no' to, that my body is having to say 'no' for me?"
But as you say, 'who cares for the carers' indeed? When one has not had good limit-setting skills from childhood, caregiving raises additional challenges to those already ill-equipped. (well, speaking for myself.)
Thanks for your kind words of support, also. I am trying hard, during a v stressful time (and egads, more symptoms!) and your gentle words have given me more strength. Still thinking of you and sending lots of love and grace.
EDITED to add... Also, Plum, I forgot to say I added another link to my NY Times ones in this thread, as it had gotten left off the first time, so hope you saw that one too. I also found the comments at the end of the articles really helpful.
RSR
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Edited by - RageSootheRatio on 05/14/2013 11:29:26 |
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gigalos
Netherlands
310 Posts |
Posted - 05/14/2013 : 14:58:45
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well, plum, to be honest I also have to forgive my mother for not standing up against my father...
when I wrote my post I felt there is still some forgiving to do... it isn't easy to completely forgive and not worry about what if something like that happens again.. I want to live in the now though, so I keep doing it..
I am becoming curious about this video btw..
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plum
United Kingdom
641 Posts |
Posted - 05/15/2013 : 05:51:22
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RSR, thanks for the additional link. You're a goldmine of support and nurturing information.
I'm going to watch the video again because there's so much applicable wisdom. I was equally struck by the examples you highlight, especially the chair one. My whole system is set on edge if I'm sitting and someone breaches my space head-on. I used to pull myself in tight but in recent times I've noticed that I'll extend a crossed leg and use my foot as warning and protector, or I'll get up and walk away. So that demonstration had a lot of resonance, and amplified my body's reaction and innate wisdom. My body saying no. And so much more. There are echoes of Bruce Lipton here too.
There are some recordings on youtube of Mate discussing the artists body which I've not viewed yet but am curious about as I think a lot of tms sufferers possess a sensitive and creative nature that is easily harmed or crushed in our culture.
Simply a fascinating video all told.
Gigalos, it really is worth an hour of your time. And as for your sage observations regarding when such incidents roll around again...too right. A compassionate embrace from start will do well.
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No sh*t Sherlock.
