Christmas, family, friends, loss, grief, and hiraerth

hiraeth 2If you are someone with dementia, or supporting a person with dementia, remember they may have hurts and losses, perhaps even similar to what I describe below, but consciously or unconsciously exacerbated with all the ‘joy’ of an occasion like Christmas, that is ripping up their heart inside, and making them seem more anxious, upset or angry.

They are grieving too, perhaps, for the loss of, and homesickness of a ‘home’ they can never return to.

The family in my life who still have a relationship with me consist of a very small number of people related to me by blood, and a very large number of close friends, my ‘chosen family’, who love me exactly the way I am, awards or no awards, farts or no farts, having a direct way of telling it like it is (for me), and every other easy to live with, or difficult thing about me! Thank you.

I love you all more than I have the words to tell you and without you, the loss of ‘contact and connection’ with so many I am related to by blood or was once very close to, would be far more devastating.

Not one phone call from my parents, sisters, nephews or nieces now for some time, some no contact at all for many years. Heart breaking? Yes. Is there anything I can do about it? No. I have tried countless times over the years, and the abandonment and unkindness simply got worse and more devastating. There are also a small group of people who were like family to me, who have also cut us out of their lives, and this hurts in a way I do not have the words to express. No argument, no explanation, just no contact, and after a few years of trying to stay connected, and getting no response, I have also had to walk away.

Not being invited to a Godchild, niece and nephews wedding, and other significant events like that, make it so much harder, and on these occasions, I usually cry for days, sometimes week on end. It would be so much easier if there had been a huge argument and then we had decided not to be friends anymore, but the absence, and the ongoing silence, roaring inside my soul, is deafening. It also has meant our sons have almost no relationships with grandparents, aunts, uncles and cousins, and those people we thought were as close to us as family, making it so much more unkind.

The tentacles of loss deepen and stretch the boundaries of all of our hearts.

So I have to live my life as if they do not exist, as that is the only way I can emotionally survive. The biggest challenge with that is at times like Christmas, when all the adverts and so many of the quotes and images around me are of happy families, who all appear to love and support each other (yes, I know much of it is advertising, and a lie), makes managing and living with the loss of not having a relationship in particular with my parents and sisters, so much harder to bear… I guess I still love them, based on the fact it hurts so much not to have a relationship with them.

Add in the dementia factor, and one simply has to accept or realise that it is much harder to be rational about these things, and to find ways to live with them without crumbling.

All I can hope, is that one day I actually forget them.

Authors Note: it is only through such raw honesty about how I feel, and what the experience of these losses has been like, that I feel I can survive it at all…

Please, no sympathy as that is not what is needed here, just acceptance and understanding, and perhaps a shoulder and an ear.

56 thoughts on “Christmas, family, friends, loss, grief, and hiraerth

  1. Oh Kate-i feel sooo sad and sorry for you reading this post. That is so horrible you havent been invited to weddings and birthday parties because of your Dementia-that makes me so sad to hear that my friend and i wished people had more empathy for you and though about other people not just you. I hope my Aunty starts talking to my Grandad and includes him in conversations on 4 occassions this year she has not talked to my Grandad and it breaks my heart and i am sick of it-i say its an “opportunity missed”. I say, “you never know what will happend next with Dementia so make the most of it”. I hate how your family take advantage of you-you are a giver my friend and you deserve to do something nice and put your self first for one day. I feel for you Kate reading this post and its heart breaking hearing that. I am always here if you need me or you can email me if you need anything. You do MUCH more than the average woman Kate by far! I do hope there is a light in the tunnel and your family start being nicer to you. I hate how people dont respond when you make an effort-that breaks my heart and people should have friends and hang out with people from a wide range of backgrounds and people who suffer from illnesses/disabilities etc. I know have two friends with an illness or disability-one friend who has a physical/hearing/intellectual disability and you too now-i am so blessed to know you. You should shout yourself to Nz for a treat and we can hang out and meet up and get to know each other and show you around Auckland!Lots of love and hugs xxxx

    • Oops-have just realised i made a mistake again. In the sentence “i wished more people had more empathy and though about other people not you”. I meant “thought about other people than themselves”. NOT YOU. Sorry about that mistake again-i must proofread before posting!😏

      • Oh Kate-that is soooo horrible about your ex husband doing that. Then how nasty of your ex family and friends accusing you of being a “medical fraud”. My definition of a “medical fraud” is someone who looks without someones permission about someone elses medical history. People should only tell people if they want to about there medical history-no one should ask or remind them of there medical history 4 years and 2 years later down the track like Styan did for me. It is illegal and i am not sure why he wants to be obsessed with my medical history-he has medical issues too(epilepsy)but i never ask him or mention his epilepsy too him as its none of my buisness to intervene with his medical issues. He laughed at me because i forgot what treatment i had for my dad attack. He laughed at me about how i had a “technis” for my dog attack(which is a form of treatment but dont really know it well or nothing about it), and he laughed at me about how i broke my arms and how i had to do a stress test when i collapse and thankfully the results were wonderful. I was thinking in my head that i should be the only one to tell people about my medical history NOT him. Wish he could be nicer about peoples medical issues. He also laughed about my Grandad having Alzhiermers and said i would be a useless ambassador and made no difference. I hope to not see him again(if possible). Big hugs to you too xxxx

    • Sadly Sam, I found out earlier this year it was not due at all to me having dementia, but rather due to those people in my life who were not real friends, and worse than that, were my enemies (family members, and past friends), cruel enough to tell a reporter I was a medical fraud. My husband and close friends who do support me, and are proud of me, believe it to be jealousy, mental illness, Tall Poppy Sundrome, and narcissism that was the real reason for their cruelty, but very difficult to recover from personally. Oh, and total ignorance, and obviously although once nice to my face, were very unkind behind my back, and too gutless to be up front and discuss things with me personally. One woman I went to school warned me a few years ago there were people saing they did not believe I had dementia, but she was too gutless to tell me who (clearly not a real friend), so it got totally out of hand, and almost destroyed me and is still impacting my husbaand and sons. Obviously, I’m mostly over it, but have defitiely cleaned out my contact list!

      • Oh Kate i am so sorry to hear that, and that is so cruel and how nasty that person to tell a reporter that your a “medical fraud”. You most certainly are not and people need to understand that there is mild Dementia(which is what you have)and NOT always focus on the major forms-they need to focus on the minor forms and they need to focus on the positives NOT the negatives. I agree, people are probably jealous of you that you go the extra mile and achieve more than most people without dementia however i am not and you are wonderful and they need to focus on the positive side of your Dementia NOT the negative side of it. Thats so mean people are rude and heartless too me behind your back-they should be nice and understand your situation-i thought all Australians were really friendly until i have heard those stories-so so so sad and heart breaking. Thats so sad it impacts on your life and she certaininly doesnt sound like a real friend-my dads friend Styan makes fun of my collapse two years ago and how obviously when you have a collapse there is a temporary blockage in the brain and how i lost concientiness and how i forgot my siblings names and how i thought my Dad was a dwarf and about my dog attack and my broken bones so i decided to stop emailing him as i an sick of him being mean to me so i blocked him on facebook too-maybe you should block those horrible people on facebook too. I hope your husband and sons are coping okay too-it robs the life of them too and the pain never eases. Good on you for clearing out your contact list-i have cleared Styan out too as he is driving me insane and being a pain!Lots of love and hugs xxxx

      • Wow Sam, it sounss like you have been through a lot too, and at a young age. Hugs to you too. Yes, most Australians are friendly, but not always behind your back. We do have the Tall Poppy syndrome here, in strength. Even philanthropy is sometimes seen as someone trying to show off, rather than taken for what it is, which is doing good! x

      • Hi Kate,
        Yes-i have been through a lot with Styan bullying me about my medical history etc-he is trying to look at all my medical history from my Doctor-hopefully he doesnt do it though. He is one weird guy! That is sooo true but they arent behind your back though sadly. Hugs back to you from a cold Nzx

      • OMG… it is illegal to try to access someones medical history 😦 😦 sending lots of hugs. I’ve had an ex husband do this to me (and succeed), and then felt the need to provide decades of medical history to lawyers and some others, after being called a medical fraud by very ‘ex’ friends and family! I know how you feel and am sending BIG HUGS xoxox

  2. Dear Kate

    I had to put my wonderful mother in care on Friday. The doctors all said I couldn’t look after her anymore because I am on my own and was burnt out and would get sick myself. I have spent 3 days in tears. Like you, we experienced the abandonment of family friends too caught up in their own lives to remember the generosity and friendship of my mother when she was well. The way you describe the hurt, the loss , the deep feelings of grief is spot on. The self-centredness of some people is breath-taking.

    I read your blog most days and I thank you for your insights, your candour and your spirit. You have been my companion on a very hard and lonely journey ( and I hate using that word!!!!!)

    I hate Christmas time but this year I will be sharing Xmas day with my mother and the other residents at the facility and it will be a privilege to be with them and the wonderful carers.

    lots of love
    Carmel xxx

    • Dear Carmel, thank you for reading my blog, and I am glad it helps a little. So sorry to hear you also have such ‘aloneness’ on this ‘journey’ (yes, dislike that word too!) – perhaps in your experience of supporting your mum – I call is my experience of living with a dementia. Huge hugs for you and your mum at Christmas and always xox

  3. Kate, you give us such candid insight,I had never considered that family would chose to lose contact. How sad for your children though that they wont know your family and what a loss to your family to not realise how wonderful you are.

    I’ve been researching “Blue Christmas Liturgy” for people who struggle with all the “joy and light” when it can be such a lonely and sad time.

    You are amazing and I’m so glad I found your blog! x

    • Thanks so much for sharing with me here… it means a lot. No matter how we treat others, and whether we realise it or not, there is always a ‘cost’ to it, good or bad. The cost to my children hurts me far more than the personal loss xx

  4. Hello dear Kate. I send you HUGS. I do not do Christmas. That is it. Can feel your hurt and pain. Know that you are loved. Bron xo

  5. I know how you and the other commenters feel, since it has happened to me too. I’m very appreciative of the fact that you posted on this subject, because I’m sure that it will help many to read this …. so we don’t feel so ‘alone’. And I’m sorry for anybody who has lost family and friends and are now lonely. I am one of those, and if it weren’t for the internet and connecting to people like you and communities too, I would be an absolute mess. So thanks Kate, for your friendship and your openness in discussing this {big hug}

    • Thanks dear friend… the ‘aloneness’ that this loss brings is something quite different to being alone (physically). The hurt continues, at the sub conscious level no matter how well you appear to be coping (((hugs to you too)))

  6. Here I am, a New Friend. I cannot replace those who are “lost to you”, but there can be joy in finding each other! You are a treasure in my life. Each day I look forward to connecting with you. Peace and love to you in this Holiday Season. Mary

  7. Shoulders and ears here lovely Kate!

    I am not in touch with any of my blood relatives for different reasons and the pain is great at this time of year.

    Sending you lots of love xxx

  8. Oh my darling freind n adopted sister lol,my heart is broken with you,sending my invisibe angel to you darling.hugs n kisses till we see you at moonta bay in january,hope you can make a day n night. Love you forever and ever, chin up and think wonderful thoughts of us all together,will ring you xmas day.love you my darling.xxxxxxx

  9. Merry Christmas to you and your family I can’t believe people can treat you that way you have an illness they should be loving you and supporting you,pat yourself on the back your an inspiration with all you say and do thankyou.

  10. Thank you for your witness Kate. Abandonment by those who should be so close in times of need is shameful and cruel. Our children are such a big part of us, their griefs and sickness feel like our own! You have inspired an online family whose watchwords are admiration, respect, and care.

    • Thanks Trish… and “shameful and cruel” have been two words that also came to my mind. But, that is their choice, and there is nothing I can do about it. Once can bash one’s own head against a brick wall for only so long, before it become unhealthy to keep trying.

  11. Thank goodness I am getting to know you. I am realy looking forward to meeting you and us listening to Willie Nelson together. Another one on its way in a moment. You have made such a difference to our lives. Sincere thanks Kate for being you.

  12. Kate, we have spoken before about this so at this time you have my thoughts too, have a drink through cyberspace with me and great love to you and yours……….Elaine

  13. Lean on me doll. Since my mother Gwen died 3 years ago there have been no family get-togethers other than scattering her ashes. We see my wonderful niece occasionally, both here & in Sydney, & once my nephew & partner came to stay. My sister has managed one overnight stay, not even 24 hours, since V’s Dx….apart from racing down the coast to finalize our mother’s probate immediately after her death!! It was V & I who took Gwen out for her last Christmas lunch. So that’s my family.

    V’s sister stays in touch by phone & has visited at least every year, though she lives interstate. Nothing from the others. That’s V’s family.

    As for old friends, at, least my 2 “backups” for V’s legals stay in contact & visit once or twice a year (they each live at least 7 hours drive from us). One of them has even offered to stay alone with V for a night or two in February so I can catch up with a few Sydney friends & talk my head off! A couple of my old friends visit occasionally from Sydney. I’ve had to ban one or two from the house because they take over & ignore Veda’s needs, even though they know & love her. Can’t help themselves.

    V’s Sydney friends? Not one can manage to do a 2 hour gorgeous drive or train trip. One of our mutual friends finally did catch the train but walked out on the 2nd day in a huff, saying “I don’t have to put up with this”,without further explanation & without saying goodbye to V. We both cried for days over that -although V wiped her immediately, of course.

    We’ve made some good local friends over the years. Some of them are wonderful. Many, however, like so many other people, are too preoccupied by their own life/health issues to have anything to offer us.

    I once did an “orphans’ Christmas”….with my mother…a gorgeous champagne & lobster picnic for 8-10 people at dusk on the shores of Sydney Harbour. Every year Christmas has been special for me…I cook madly, V & I do beautiful baskets of goodies for others, a bit of shopping for prezzies & put up some decorations. It’s always been about people.

    This year I’m doing nothing. Can’t afford it, sick of being generous. Don’t want to invite dreary people stuck on their own because they have such a limited life. Over feeling like I “should”.

    V is over it too. She used to stress terribly about buying people presents.

    We might still make our fabulous panforte & maybe I’ll do a cake for post-Christmas visitors. Our hearts are here, in this beautiful part of the world, together. So frankly doll, the humbug of Christmas is now out of our lives! Party time, sharing food & fun with friends, starts after Boxing Day….and goes on at least till your February visit. xx

  14. We share similar situations. While I care for my mom, my siblings have shunned her and me. My sister acts out in seriously mean and cruel ways towards us, and the dementia makes it harder and harder for me to navigate with any decorum. All I ever wanted was a close and loving family. A number of years ago I decided, that if I had any hope of having that, I would have to create that with others. Being sick, and not very able, I decided to cook thanksgiving dinner for my mom and me…and my siblings infiltrated it. For the next few years, they would bring a few odd items and leave everything for me to clean up…as if to make me pay for it somehow. I imagine a wonderful death for myself, it does not include my family…but rather people who care…who actually care about me. I imagine the same for you. You touch so many people’s lies, you have no idea the importance you hold to so many nameless others. You uplift and give hope to so many. And despite all the grief that gets sent your way, you keep going envisioning a better day for us all. You have cracked a hole and some light is shining through, all because of you…of your you-ness. I wish we were not oceans apart. I hope the lessons your sons learn is what family really means, and how to come together when any one in the group stumbles. Mine are young adults, and still feeling their wings…they have not a clue what I go through, not even the one who lies with me. I see these wonderful people we connect with online as a virtual family of sorts…I ache when they ache, and rejoice when they do well…and I love, I love every one of them. You too. I would be so very proud if you were my sister. Hang in there. ❤

  15. With or without dementia people come & go never bothering to say goodbye. From the bottom of my heart to yours i am blessed to have you in my life ( & are we on for boxing day lunch ? 😉) love you long time & despite it being their loss it still hurts xxx

    • Love you forever too dear friend, but so sorry, Boxing Day lunch won’t be on as we’re booked elsewhere, and actually having our family Christmas lunch on the day for a big change, as we have interstate visitors! xxx we WILL find another time though

  16. Hi KateI know how you feel, I have one sister who rings me on a regular basis. I am one of five, and none of the others contact me at all. That to me even though it hurts, suits me as I do not want their false sentiments and disbelief anyway. I feel for you at this time of the year. Don’t forget you have plenty of people who love you dearly, and we here to support you in any way we can. Always remember they are the one’s missing out,and, Karma is a real bitch. Both Sue and I would love to be there to give you a big hug, but, for now, we will send one through cyberspace all the way to Adelaide.Stay cool and safe. BIG HUGS ANS KISSES TO YOU, PETE AND THE BOYS.

    Best wishes,MickMick CarmodyMobile +61 449 295 900Dementia Alliance International | @DementiaAlliancOnline Support Group Facilitator and HostSee the person, not the dementia

    Date: Wed, 16 Dec 2015 23:43:37 +0000 To: mikoc@live.com.au

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