I first posted on this site in May 2010, I was confused, frustrated and felt totally out of my depth and very much alone, even aged 40+. My Mum had been having "memory problems" for over 18 years following heart surgery. She was very intelligent and hid lots of her problems, and lied to Doctors and tried to cheat on the memory tests. But finally she was diagnosed with Vascular Dementia. I had suspected it for years, but no one would listen, medical people, friends or family. I turned to this site in my hour of need, and today I found a link back to it that I had saved. I only made a few posts but the responses helped me get through some very tough and dark times. So I wanted to thank you, you may not be the people who replied to my posts all those years ago, but you are the people caring enough to be reading these posts now and helping other carers today. You gave me advice and support when no one else was interested, and I had started to believe that I was the one getting confused, not her, because she was so convincing in her denial of having any problems. I also felt bad, I felt huge guilt because I was failing my responsibilities, because I could not help my Mum, and had even started to feel I could no longer see her as my Mum. Her moods, anger, and difficult behavior was making it difficult for me to cope with physical visits, I became a distance carer for my own sanity (on the advice of my own GP), and I organized all her care so she was safe in her own home for as long as possible. My brother denied she had dementia, he would get angry and turn on me, if I mentioned it or if I arranged medical visits. It took him until about 2015 before he accepted it, so dont give up on those who seem to be unable to accept it and find it easier to bury their heads in the sand and thereby fail to help or support those that do, they may eventually change. If they dont, turn to others and try to understand it is their way of coping.
I just wanted to come here and share my experience. I see from some posts people are suffering as I did, trying to get medical intervention, diagnoses and help. Mum lost friends who did not understand why she was "rude or uncaring" towards them, she was too anxious to go out, she became stressed and depressed. In the summer of 2016 she was finally prescribed antidepressants, and she changed. She was less anxious, laughed and seemed to relax, her behavior was sometimes still challenging when she knew no one, but close family were around. Her memory was almost completely gone, and she was struggling to remember family members names or details. She passed away in hospital late in 2017, after a fall at home.
It is not easy watching people who you love slowly dissapear, and leave what can sometimes seem to be a completely different person in their place. No one can understand that pain until they experience it. Love and sometimes even hate get mixed up in your head, you feel bad for wanting it to end. I had years to come to terms with this, I read books, and learnt how to distract conversations that were fueling her anxiety and anger. I learnt that when she sobbed down the phone, I could not always go and fix the problem, and I would be left worrying about it, long after she had forgotten she had even made the call. I realized that sometimes she would try to attack me, physically and emotionally, but I know she was not always in control of her own behavior, so I forgave her. Flare ups came from her frustration at losing her memory and skills, when she felt scared because things I could not understand were sinister to her, when she confused (overwhelmed by questions or general bustle of life) or when she felt she was no longer in control of her own life. Now looking back, I suspect I would have felt the same in her shoes. I learnt to ride the waves of difficulty and try not to take it too heart because it did hurt, and sometimes I had to lie to survive or protect her. Sometimes I had to go into her reality and view the world like she did in order to understand and find ways to help her stay calm.
Please be gentle with them, they are very scared because life may not make sense. They may know what they are losing, and they know when they are being treated like children (because sometimes they act like one). If the truth will hurt (Dad died 20 years ago), do we need them to know it?. If they repeat something 8 times in half an hour, it is difficult to listen too, but do they really need to be told of their forgetfulness. Yes there are lots of things they can no longer do, sometimes for their own safety. But please try to encourage them to have some personal pride by letting them do small things if they want to. My Mum would get up at 7am to get washed and dressed before her carer came to help her, (which led to issues with her wearing the same clothes or not washing her feet), but it gave her a sense of control and pride (and she didnot die from having smelly feet, only her shoes did). I found out she stayed calm if I did not put her on the spot by asking her a question (even in conversation about how the weather had been), because she did not know the answer and so would distract from the fact by becoming defensive, angry or having a melt down. I tried to share positive stuff, not scary world stuff, watching the news was not helpful. If they are happy to go out for trips, it may be hard work for you, but it can help to keep them motivated. I found Art/easy craft projects or music could be good distractions, not for my Mum but I saw it help others. But try not to lose yourself, because no one can sustain being a carer 24/7 everyday of the week. Ask, or even demand help because you deserve it, and you need it to survive.
Finally, You dont have to be an angel, some people can be, but we all have our own problems to contend with. So please look after your selves, because you still deserve a life too. Get as much help and support as you can, and one day it will end, and you may feel guilt, pain and even regret. However I am sure we all deserve wings, because we do try to do our best, and that is all that we can do, so hang on in there. I survived and I am no better than any of you.
I just wanted to come here and share my experience. I see from some posts people are suffering as I did, trying to get medical intervention, diagnoses and help. Mum lost friends who did not understand why she was "rude or uncaring" towards them, she was too anxious to go out, she became stressed and depressed. In the summer of 2016 she was finally prescribed antidepressants, and she changed. She was less anxious, laughed and seemed to relax, her behavior was sometimes still challenging when she knew no one, but close family were around. Her memory was almost completely gone, and she was struggling to remember family members names or details. She passed away in hospital late in 2017, after a fall at home.
It is not easy watching people who you love slowly dissapear, and leave what can sometimes seem to be a completely different person in their place. No one can understand that pain until they experience it. Love and sometimes even hate get mixed up in your head, you feel bad for wanting it to end. I had years to come to terms with this, I read books, and learnt how to distract conversations that were fueling her anxiety and anger. I learnt that when she sobbed down the phone, I could not always go and fix the problem, and I would be left worrying about it, long after she had forgotten she had even made the call. I realized that sometimes she would try to attack me, physically and emotionally, but I know she was not always in control of her own behavior, so I forgave her. Flare ups came from her frustration at losing her memory and skills, when she felt scared because things I could not understand were sinister to her, when she confused (overwhelmed by questions or general bustle of life) or when she felt she was no longer in control of her own life. Now looking back, I suspect I would have felt the same in her shoes. I learnt to ride the waves of difficulty and try not to take it too heart because it did hurt, and sometimes I had to lie to survive or protect her. Sometimes I had to go into her reality and view the world like she did in order to understand and find ways to help her stay calm.
Please be gentle with them, they are very scared because life may not make sense. They may know what they are losing, and they know when they are being treated like children (because sometimes they act like one). If the truth will hurt (Dad died 20 years ago), do we need them to know it?. If they repeat something 8 times in half an hour, it is difficult to listen too, but do they really need to be told of their forgetfulness. Yes there are lots of things they can no longer do, sometimes for their own safety. But please try to encourage them to have some personal pride by letting them do small things if they want to. My Mum would get up at 7am to get washed and dressed before her carer came to help her, (which led to issues with her wearing the same clothes or not washing her feet), but it gave her a sense of control and pride (and she didnot die from having smelly feet, only her shoes did). I found out she stayed calm if I did not put her on the spot by asking her a question (even in conversation about how the weather had been), because she did not know the answer and so would distract from the fact by becoming defensive, angry or having a melt down. I tried to share positive stuff, not scary world stuff, watching the news was not helpful. If they are happy to go out for trips, it may be hard work for you, but it can help to keep them motivated. I found Art/easy craft projects or music could be good distractions, not for my Mum but I saw it help others. But try not to lose yourself, because no one can sustain being a carer 24/7 everyday of the week. Ask, or even demand help because you deserve it, and you need it to survive.
Finally, You dont have to be an angel, some people can be, but we all have our own problems to contend with. So please look after your selves, because you still deserve a life too. Get as much help and support as you can, and one day it will end, and you may feel guilt, pain and even regret. However I am sure we all deserve wings, because we do try to do our best, and that is all that we can do, so hang on in there. I survived and I am no better than any of you.
