Being a “burden” to our care partners

burden

Yearning for life before dementia
Never to return
At least, not until I die

But I say to myself
Each and every single day
There is no need to die now

The sadness stalks me
Tempting me to give in to dementia
Hiding in the recesses of my mind

Telling me to stop paddling
To give up and let myself sink
And give in to the symptoms of dementia

If I decided to do that
The huge impact on my husband and sons
And my love for them

May disappear from their sight
From their being
And my love may feel as if it is not there

Instead filled with the burdens of
Caring for a wife and mother
With dementia

Screen Shot 2015-09-08 at 9.40.15 pm

24 thoughts on “Being a “burden” to our care partners

  1. I wish I had more burdens in my life like you Kate. Your posts are inspirational and help me so much in my role as a Care Partner. Hope I am able to give you a real hug one of these days.

    • One of the main reasons I started writing, was to help my husband and sone understand my world, from the inside out… that it helps you, is such a wonderful bonus Paul. and yes, that real hug will be wonderful, although I suspect there will also be a lot of tears xo

  2. Kate. Like myself and many younger friends I have, that live in dementia type symptoms. do not have a choice of NOT living in them. “cell death: is the progression of all types of dementia’s. and during this progressive illness. the brain areas being destroyed leaves dissbailities, thats then we are a burden to our partners. “without any choice” of changing our dissabilites caused by this neurological progressive disease.
    Our disease just doesn’t cease “whatever” we do that’s why it is a neurological degenerative brain disease. Many I know are losing ground and only after a few years “certainly” by no personal choice of their own.

    Their brain disease with it’s given name type of dementia is spirilling them distreuctivley and tradgically into “dementia”.
    The worst of my friends that have the known Frontemporal.. a male friend only late fifties diagnosed only three years ago, has had to go into care this gorgess couple we were going to do some motor home travels with their lives just crushed so in love and such a perfectly fun couple. NOW shattered.He has lost most of his brain capacity to remember even how to walk. HE was a surfer and due to the frontemporal area of the brain that loses its ability to function appropriately he was found surfing naked, as he had escaped from his wife’s supervision and biked off to the beach, when she got to him he was being verbally abused by the other surfers, and he was at risk for of being hurt physically. EVEN if they knew he had a brain disease. OR he was in a dementia state. JUST simple human expectations of appropriate behaviour required for our communities well being and the person – victim of his loss of personal self control safety. Another of my friends here in Casino has the “Besnons type” he can no longer go anywhere without gettiing lost even in his own home, he is losing his ability to eat appropriately (fin his mouth) was a man of intense character now being reduced to continuous disgust of himself. He needs 24 supervision from his wife. both two couples live in their worlds quite tragically and so sad.One couple only in their fifties, the other he is just 60yrs and his wife younger. They had their entire retirement planned. The are farmers and perhaps the wealthiest people I have ever know. and now he is only comfortable within his own farm and home. So to answere your question? which we you and I view so differently about the dementia journey. IF we truly have a type of neurological degenerative brain disease a know type that is spiralling us into that given type dementia. Then we cannot “stop” the progressive wrath of its journey within our brain lobes. AND we will become as most of us are already a “burden” to our most loved hubby’s and wives Until incontinence arrives and falls are happening for broken bones.. then for our loved spruce when they cannot cope anymore must have them cared for in a facility. OR a burden of intensity is unfair. We then need to put ourselves into a facility, and both partners know when that time arrives. so Kate a long answere which we do not agree with mostly. as I live in bonds with those who are living in the dread of this disease in re-ality Symptoms effect the area’s of our lobes that begin it and the symptoms line up with the disabilities and there is no personal choice how to not live in them. I have tired as the positive person I have always been in my faith and overcoming personality HOWEVER my Neurologist is doing his all to give me supportive medcial support but Medication to stop my spasms pain for my involuntary movement due to mine being a deep brain cell death through vascular typ I now believe IF medication can give some “respite” of “whatever” then so be it. Living well in these neurological downward spirals into dementia? We all do our best but none of my friends all I have known over the past few years in their journey were all positive and fun people. They did not give up and allow their lives to be destroyed.. we have all been doing all to slow down the progression. so speak as you do Kate as a well knowledged advocate. but not as one who is enduring it’s wrath and destroying your entire life and world as my friends are living. Just had to answere this one. soryy for offending you as this may. JUT view my personal journey and those who I amd living it with are different than those “out there” quite unlike any I have known .And I have known many. and now my own mother. My Father my Uncle, myself, and many many friends from the dementia social outreach here in NSW. Carol Cronk.

    • Dear Carol, thank you for joining the conversation again, and no, you have not offended me. It is so different for everyone, and people like the late Dr Richard Taylor, and our dear mutual friend Christine Bryden, and many other dementia advocates like Mick Carmody, Agnes Houston, Helga Rohra and so many others easily acknowledge that.

      We too, do not have a choice about our brains dying… it is happening to all of us, perhaps not the exact same disease or condition as you or your friends on the central coast – as you know there are at least 130 or more types or causes of a dementia – but we have ALL been diagnosed with a dementia, a chronic, progressive terminal disease. No-one is giving up or chooses to give up, we are all just responding to the illness differently. Sometimes, the disease refuses to allow us to win, no matter how much we want to. We all know that will happen to us, and most of us do dread the day… Personally, Peter, and our sones, prefer to live inside the denial bubble as much as possible, until it is no longer humanly possible.

      • Kate what are these 130 types of dementia” when all the people you spoke of, all have said they have one of the known types of the neurological degenerative disease Alzheimer’s? lewie bodies etc. fronto temporal and the other know on’es. None of the known presenters you mentioned speak of any of these unknown 130 types.? none of my neurologists have ever tested me for any other Dementia types except the one’s were aware of. that end in dementia. . People living in the Alzheimer’s cannot live YEARS well in it, as there is nothing that can stop the amyloid plaques ravaging through the brain, destroying the brain and the brain capacity to function, as my father/Uncle and others I have know with it. My first diagnosis, until I was not living in the symptoms know to its wrath I sleeked clarification abut my diagnosis. (thankfully) as it, and Frontotemporal cell death in those patterns were not caused by amyloid plaque and tau, but of tiny strokes. In in my perception of known people with these types it is the worst as I have known it. And knowing people with these types is very clear to diagnose, they. all deterioted so quickly and horrendously. The divers types under the banner of Alzheimer’s. all efect the brain lobes in the symptoms that first took us to our Drs, due to cell death within those brain lobes. I have never heard of anyone giving a living well in “dementia”? but we can live to our best until then. menti I have not heard anyone speak at a convention about any other brain disease that is taking them into dementia. only the known typesthat they have livied for years without anym intensity of loss of their brain capacity. IF other Neurological degenerative terminal brain disorders/diseases are taking them into a “dementia” why don’t they present their type of brain issue that will end in dementia. instead of saying I am a person with dementia?. We are not living in dmentia- until we are in it. then living IN iT, how then will those with it speak about living in it. this is my question? towards an easy awareness for those listening to a “dementia” journey. Awareness needs to put out there, so our world can understand why those people can live well during their journey, until they reach their destiny into a dementia state. Your in a position to change the way people diagnosed with a type of their neurological disease that has caused cell death within a given area, which has caused a disability in brain functioning, which cannot be regained. “whatever” all our lobes have a function as you know, once they are damaged they die and cannot perform again as they once did. that is dementia. these other 130 you speak of apparently work differently and they need to be spoken about for awareness. As people only are aware of the known dementia types, which confuse all who hear presenters when they live so extremely well with such a brain destroyer. I just say to you who have the ability to get more correct information “out there” about when people with a type of brain disease which will end in dementia. name their type and explain it/it’s symptoms and how they manage their symptoms for their best way of living in them… All types now can be clarified by the new scans and the neurosciences testingswith their symptoms. then a true diagnosis can be given, and then spoken about in re-ality. no one should accept a diagnosis without researching it and ensuring they have it accurately diagnosed.. That’s all from me . not in your blog as under yr blog heading but just want you to think about some of what I have lived /known and understand. thanks and sorry for sch a whaffle on Carol.

      • I’m not sure what you mean in this comment Carol, but yes, there are at least 10 types or causes of dementia, and the word dementia simply being an umbrella term for all the different types. Rather like the word fruit. And as Christine Bryden has proven, by living 20 years with dementia, and living quite well with it using supports and having an enabling partner in Paul, it is possible to live well, or at least, as I prefer to refer to it, living beyond the diagnosis. All of the people i mentioned in my reply to your comment, have bene formally diagnosed with dementia. Again no need t apologise for sharing your thoughts and experience, it is, for all of us, a very unique experience. Take care x

  3. Nice Poem, crap topic.

    Most people I’ve met who are allowed to LIVE with dementia are not a burden more like an inspiration. You make me proud every single day, I love you.

    BUB XXX

  4. I have been spending a number of posts on my blog sending feelings of love and compassion as well as UNASKED advice to my blogger friend Kate Swaffer. I think the reason I continue to fall in love with this woman is because she has given me so much insight into Gregory’s side of this road on which we have been traveling for the last twelve years.

    Perhaps I can give Kate insight into my side, the spouse’s side of the road. I used to call it a path, but obviously over time it has become a bigger and bigger part of my life so it has grown from a Path into a Road. It has grown in sorrow and joy, in fear and in understanding, in love and being loved. It has grown! But I would not exit this road for any reason or temptation you could offer!

    * * *

    Regarding your poem: Yes Kate fight it. Yes Kate keep on keeping on. Yes allow yourself a tear or two. But two items make me sad to hear.

    ONE: YOU ARE NOT A BURDEN TO YOUR LOVED ONES!

    That is like using the term “suffering with Dementia/Alzheimer’s” rather than “living with Dementia/ Alzheimer’s.” They love you and do what they do and will need to do out of love! It just is! It just is!

    Maybe I should put together acceptable language for use with those of us who live with and/or love someone with Dementia/ Alzheimer’s! Gregory is not and never has been a BURDEN. It has been hard. It has been trying at times. It has been a bumpy ride. etc etc. But it is what I do because I love him NOT because he is a burden. Would you take that part of love away from me? Would you take that part of love away from your family? Please don’t. It is what it is!

    TWO: TRY NOT TO BE A BURDEN TO YOURSELF.

    I share my story by way of comparison, although I know my story is different especially because in my case the situation was curable. When I had cancer I lost a year. My way of dealing with it was to pull into myself, knowing Gregory was there for me when I needed it. I didn’t want to be pampered, I didn’t want to be hovered around. I didn’t want other’s sympathy (even empathy was difficult.) I hated it.

    But similar to Dementia, I did have to depend of the kindness of others. I did have to slow down and take care of myself. When I pushed, I paid more than if I hadn’t pushed. Over the course of the Chemo I got slower and slower, I got more and more tired, I was able to do less and less for myself. The doctors compared the impact of Chemo to “Pregger’s Brain” the reality that when a woman is pregnant, there are chemical changes that affect her thinking and sometimes her ability to function in ways she always had. The doctor even had one dedicated position in her office to help patients deal with filing insurance, paying bills, etc because of the effects of “Chemo Brain.”

    I share this because I hate seeing you beat yourself up. Becasue there are some things we can control in this life, there are others we cannot. Because there is a fine balance between “strenuous exercise” to work out a kink vs injuring oneself more. Because the only thing, in my opinion that matters, is loving and being loved! No matter what!

    I am not saying you should “disengage from life” as you have discussed previously but rather “rearrange life” so the most important pieces are the ones you spend the most time with for as long as you are able. I would guess right up front there are your husband (BUB,) your sons, and then helping others when you can.

    Here is my version of “The Serenity Prayer.”

    THE SERENITY PRAYER, MICHAEL’S VERSION 2009

    Grant me the serenity
    To accept the things I cannot change
    Courage to change the things I can
    Wisdom to know the difference.

    Living one day at a time
    Enjoying one moment at a time
    Recognizing that life operates on a continuum not at extremes
    Working towards balance in all things.

    Holding on to the important parts of my life with all my might
    While letting go of those which I can no longer hold on to.
    Sitting with my pain and grief and suffering
    But also letting them go while learning their lessons.

    Understanding that growth in awareness is continuous
    But knowing that all things are not knowable to me
    Keeping an open loving heart with healthy connections
    Even if loss of those connections will cause pain.

    Accepting this world as it is, not as I would have it
    Accepting the people around me as they are, not as I would have them.
    Trusting that all things will be right.
    Trusting with faith in myself, that I may be content in this life.

    (Thanks to Reinhold Niebuhr author of the original Serenity Prayer.)

    • Many my thanks dear friend… for sharing your side of the fence, for your friendship and wisdom, and most of all, for being true to yourself, and sharing your love. Most of the time I do not feel like a ‘burden’, and my husband and sons do tell me I am not a ‘burden’ to them. My inner concern and ‘feelings of being a burned’ get when up after reading about the experience of other carers, some who even say how much they ‘hate’ caring, even though they also say they would not swap their role and they love their family member with dementia, and how hard it is for them. Many family care partners quite actively and publicly object to people with dementia telling it like it is from our side of the fence, and this makes it very hard for everyone. We [people with dementia] all 10000000% understand how much love and commitment it takes, and we appreciate our care partners, most often far more than we do or in some cases can, tell them. But reading about how much of a burden [we] are, ignites the pain and the totally irrational guilt of being diagnosed with dementia in the first place… dementia is one journey my husband and I sometimes detest, and love, all in the one breath. It has made us closer, love more deeply and openly, and look for the good in each other… it has ensured we appreciate every moment of every day, and each others love. What a gift, one that many never receive, and if it had to be dementia to bring us that gift, so what.

  5. We all owe it to ourselves & to those we love to live our own lives to the full, dearest Kate. As long as we can bear the pain of our mortality…and its end may also become our ultimate choice.

    Personally I expect the State to support both my quality of life and my end of life. I worked, paid taxes, expect something back. It’s my political right.

    Am I to believe that I’m a “social burden” because my body gave out & I’m on a Disability pension? Not on your Nellie!

    Veda supported me on my “crippled” days for so long, put up with waiting on me to get able to move into the day. Now I need to do that for her.
    Maybe we/our disabilities really do “inflict” burdens on those we love & maybe it’s our guilt projections that make us see ourselves as a “burden”.

    And where does this language of “burden” stem from anyway? Public health policy GF!
    Spin. F…’ m, we know better. xx

    Don’t mourn your present future. Revel in it. 😉😚😌

    • Most of the time… we both revel in the deepest love and brightest future dementia has given us… so often, all the little things are forgotten and under-appreciated until a crisis. We, even though Pete does not know you (yet), love you both for your friendship and support too xox

  6. Dear Kate, I learned that when my heart was at its emptiest, it could be a passage into beauty and freedom. Let your husband and family nurture you and keep you afloat. Let their love surround you and give you strength.
    Vicki Kaufmann

  7. You are speaking for my husband here, I believe. Just this morning he said he had to keep trying. He could not just sit around and feel sorry for himself. No good would come from that. He asks me how can I stand this? I said I love you and cried.

    • Cry together… hug, love more, and if you can find a way to do it, laugh more too, and often! Even at the tough stuff… let the laughter either precede or come after the tears… but most of all, appreciate the love xx

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