Sunday 17 March 2019

Be Kind to Carers of Dementia Sufferers

A friend of mine felt so upset at a thoughtless remark by an acquaintance recently that she found herself moved to publish a short letter in the village Chronicle. Since then she has had a lot of positive feedback from other dementia carers as well as people looking after sick and disabled people. None of us can be certain that the task of carer will not be our fate too, so it well behoves us to be kind and understanding.

When a diagnosis of dementia is made, the sufferer looks the same as before and in many ways the changes in their mental capacity are not obvious. Careless people think nothing is wrong and query why a family carer has put their loved one into a home.

What the public does not see is the constant drain on the carer’s strength; the accidents that ruin a carpet; the ’nappy’ changing and vast quantities of pads etc. that are required, the persuasion to get dressed and undressed.... 

When you see the person with dementia out for a walk looking perfectly well and smart, you are seeing the results of exhausting and time consuming care. You do not see the angry outbursts, the constant repetitions or the interruptions.

A carer gives 110% of their life and energy to keeping their loved ones well fed, clean and entertained, while getting very little back. A good day is a reward, when there is a response, but this becomes less and less.

So - when you see a dementia sufferer, the carer with them is suffering too. Please do not make thoughtless comments. You do not understand that the carer’s limits have been breached. It is to save our loved ones that they go into a home because, if they don’t, we may well cause them harm.

Another friend of mine has very recently realised, after years of devoted and dedicated care for her husband who is suffering the ever increasing physical and mental effects of Parkinson’s disease, that she can no longer cope without seriously endangering her own health. What is she to do? What else is there but find professional help in residential care?

The carer suffers all the guilt and torment that ‘failing’ at continuing personal care causes without some thoughtless remark by a chance acquaintance to add to the pain and anguish. So remember, if you feel inclined to sit in judgement, it might be you one day.


29 comments:

  1. One of my closest friends is suffering from this and a few in my building as well, not severe (yet) but this was a good reminder to remain patient and understanding and not pose questions that they can't answer, etc. I found myself getting impatient the other day with one who repeats the same conversations we've had twenty times before. None of these are in care yet but it is inevitable.

    And I too have gaps of trying to remember names. The other day, in a conversation, I couldn't remember Michael Jackson's name. I can't imagine it for others who have huge swathes of memory loss.

    So thanks for this timely reminder, Friko.

    XO
    WWW

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  2. Dearest Friko. You once followed my blogs and may recall that my eldest child , Buddy was born Down syndrome and for all his life I am his chief caregiver.it has it’s challenges as well as his rewards. Now hubby has dementia and it is going better as I learn what buttons not to push to provoke him into fits of extreme anger and shouting. It is stressful. What is more sad is I have a reasonably fit body to do things but have vision loss from age related MD and a retinal detachment. I can no longer see properly at grocery shops but Buddy guides me. So far although stress is high at times we are coping. I have hired garden help, house cleaning help and snow removal help as we get a lot. I no longer have the pleasure to take my car on trips but am allowed still to go to local shops and doctors if I have a clear vision day. If not then a cab is my only alternative. Hubby is still allowed to drive but as his dementia progresses he will be grounded. He has shown moments when he cannot recall how to get to familiar places.
    Yes I concur. That care givers need patience and some respect as well. Support is not easy to find but I try my best. I am aware Buddy too will someday get Alzheimer’s but at 45 he is doing very well. I find him very special and helpful too. Luckily he is a higher functioning man who enjoys cultural outings and comments on what he observes. Living with senior parents is also holding him back a bit but he has no place in our local community where he fits in at this time.

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  3. I have a fellow hiker who has dementia. He no longer drives and his wife sends him to spend a day with us in the mountains, but he needs supervision and no longer can even buckle his own seatbelt. It's distressing to see the progression, but we all watch out for him. He is still a strong hiker but when he loses sight of our leader he gets confused and has been known to backtrack looking for him, although he is ahead. It's very hard, but I am glad that my friend still has the ability to get outdoors. By this time next year, he probably won't be. :-(

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  4. Hi Friko - you raise such an interesting post, which made me think as I wandered back through Eastbourne town ... how we should not say the first thing that comes into our mind: all of us ... all 65 million of us in this country (though I guess I could crop 15 million off that figure as being too young) ... should simply keep our mouths shut before we've worked out what would be appropriate to say ... we can all communicate and help society, our friends and more importantly temper our thoughts. I love reading that people will still help others and gives the carer a break. It's exhausting ... and my mother didn't have dementia ... I just had to be around for her, whenever the need arose - emergency and otherwise.

    Thanks for highlighting this ... be particularly kind to carers and in general be thoughtful and kind to others ... cheers Hilary

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  5. Thank you for this post. Living in a 55+ community, dementia is very common. Caregivers have "lost" the love of their lives as they fall deeper into memory loss. If they are lucky/blessed enough to have family close by, the caregivers can have time away for themselves.

    There is a movie "The Notebook" with Jame Garner and Gena Rowlands, a tender love story. A worthwhile movie. Again, thanks.

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  6. My sister-in-law cares for both her own mother and her husband's mother. She makes it look easy, but we know it's not. She's an angel.

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  7. I am in contact with a young couple where the husdand has been diagnosed with the same illness as my husband. As is normal for this situation, he is unsteady on his feet and frequently falls. To their distress, it is assumed that he is a drunk.
    We have been through this when my husband could still walk...luckily his illness started later in life than for this young man and we have thick skins, but it is clearly distressing that people jump to conclusions rather than enquiring if he needs help.

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  8. It is so sad that people have to find strength to deal with thoughtless comments when they are already under so much strain. There is no failure in wanting to do the best and wisest thing.

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  9. Thanks for your sensitive and thoughtful post. No one really understands, unless they have lived with this. The disease is heartbreaking and cruel. Hard to imagine someone adding to this sorrow. I think of you, and remember how you shared your journey with us. Your beloved is gone, but you are still honoring his memory.

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  10. We have a friend with severe Parkinson’s, and her partner of many years gets unfairly criticized from time to time by family members and friends, without a thought to imagining pulling back the curtain to see what she faces 24/7. The woman who wrote the letter should not have had to do so, but we all must be grateful she gave voice to this to help people who have not been through this appreciate the demands placed on a carer.

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  11. The best we can do is offer to help out with visits, respite care or maybe a home cooked meal:)

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  12. Yes, we might either become the carer or the dementia sufferer.

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  13. THANK YOU for this post!

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  14. What we went through with my Dad from September until know was/is very similar, even though thankfully his illness was the reversible kind of dementia that elderly patienst can develop after a shocking event (such as bleeding almost to death, as with my Dad) plus full anaesthetics plus all the upheavel a stay in hospital brings.
    Our Dad is much better now but still would not be able to live unassisted; thankfully, he is not at the point where caring for him becomes impossible. But one day this may happen, and then we will NOT be ashamed for transferring him to a place where professional care can be given.
    If people break an arm or a leg, or need any kind of operation, they go to hospital, don't they? And when the illness is not physically visible, but of the brain (which is also physical, not mental!), such as Alzheimer's or dementia, why not find professional help for that, too?

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  15. It helps to hear angry outbursts are not uncommon. I have a relative who does that. It is hard to deal with, but it helps to understand they may not be able to help it.

    So many have commented here. It seems to a common issue... No one is alone in it, but it may seem that way.

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  16. We are all like icebergs floating in this sea of humanity. Ninety percent is invisible--beneath the surface--unknown. We should never judge by the ten percent we can see.

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  17. medical science has been successful at keeping the body fit as it ages, the mind not so much. our mother was suffering from dementia but she was so good at masking it, being her selfish self that we didn't realize it until she had to go into residential care.

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  18. We took care of my mother-in-law and only had one incident where we almost lost her, but we also hired a daycare aide while we were working. It did mean we never had a free weekend and had to take her with us everywhere. She had a very sweet personality and it was only when she became very weak that we put her in the care of a home.

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  19. So true -- thank you for sharing this letter.

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  20. It's very sad that people need to be reminded to be kind.

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  21. I did a genetic test a while ago … because I wanted to know whether I have the dreaded BRCA 1/ BRCA 2 gene … Turned out that the markers were negative … At the same time I was informed that I have positive markers for Celiac Disease and that I am Lactose Intolerant … whoopee … do I ever about know that … smiles … What I didn't know, was I have a marker for increased risk of Dementia … Anyway … Much love, friend Friko says this Alberta cat and her cat Theo. https://youtu.be/U8LuwWJTNog

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  22. Absolutely. And that's true for a number of illnesses - people are far too quick to judge.

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  23. While it's a shame that your friend had to write that letter, it was good and brave of her to do so. We're all so quick to judge, and it seems that our ability to think before we speak is being eroded. Beyond that, I was raised to put the best construction on others' actions and words. Today, people seem to delight in putting the worst possible construction on them. It's sad, and needs to be fought against.

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  24. A very worthy post, Friko. As you know my husband suffered from Alzheimer’s disease for ten years. I was his sole caregiver 24/7 and it was extraordinarily difficult. My health suffered for sure as well as my emotional being – I am surprised that I am still alive – the statistics in the US say that up to 7 out of 10 spouse over 70 years old who are the sole caregiver to a dementia/Alzheimer’s disease spouse will die before him/her. It is also a very isolating disease as friends and even family don’t understand the disease well, don’t know what to do or say and stay away (and are in a way afraid of it.) Sometimes for weeks I spoke to no one apart from the grocery cashier. All our friends disappeared and did not come back. He died about 5 months ago and I still cannot talk about all of this. I am pleased that you are sharing some of the difficulties encountered by caregivers of dementia and Alzheimer’s patients. It is not an easy task to take care of these patients when they are in your family like your parents, but it is even more difficult when it is a spouse.

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  25. Agreed completely. I have seen this happen recently with a friend whose husband went into early Alzheimer's. John has since died (at home) but the cost to Cheri was high. Yes, they deserve all the support they can get.

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  26. Points well made. At least in your country you have reasonable care homes, although that perhaps depends a bit on your local government area.

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  27. Brain disease takes it toll not only on the patient. <y friend of 44 years came for a visit and got lost repeatedly just sitting on my couch. It was an exhausting week for both of us, but one I will cherish. One never knows when they may need help. Thanks of the reminder.

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  28. This is an excellent topic. If carers don’t take care of themselves they won’t be any good to care for anyone else. All too often the person for whom they care outlasts them if they haven’t cared for themself. Sometimes dementia patients can reach a point they become a physical danger to themselves and others.

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  29. Best not to feel inclined to sit in judgement - it saves hurt in both directions.

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