The pain of witnessing dementia

[louwilkie]

My mum has had declining dementia for some years; also sometimes very coherant she is not safe and no longer has capacity.
Three weeks ago she was taken into a care home as a result of a Guardianship order initiated at our request (she lacks insight and is dillusonal about how ill she actually is).
She has accused my father of wanting to put her away, stealing her money etc so he can lead a good life on her own. This is sooooo far from the reality - he loves her so much andat 85 he is finding it so diffiuclt to understand why she is accusing him of this and saying she hates him.
No only does this awful disease affect the person, it tears the hearts out of those who love them.
Having watched some very close family members die from cancer, I am of the opinion now that this is worse - at least with cancer the patient knows and understands what is happaning and why.
For those with dementia are left frightened, angry and confused.....
My heart goes out to every single family affected by this distressing disease.
xxxx

 

[Sharon Waugh]

Having just been told my mother has dementia I totally agree. My dad died of cancer 12 years ago and this is much harder and upsetting. My mum blames me for her being in hospital and keeps saying she thought I loved her. Heartbreaking.

 

[Loganberry]

I couldn't agree more, your dad sounds like mine and just can't understand how someone who he has been with for so long can turn on him like that . For me, I miss my mam, even though she's still here.

I'm sorry I can't offer any useful advice, only say I know exactly how you feel.

Hugs
Logan xxx

 

[lady g]

I totally agree with you. Dementia is the most horrible and heartbreaking illness to everyone who has to deal with it. My mum was diagnosed last june at 76. Its still hard to take in and to deal with. Shes really deteriorating fast. Aricept is doing nothing for her. Our lives has changed beyond recognition. Dad is nearly 80 and is struggling himself. But at the end of the day we do what we can to keep it all together. many times i want to run away from it or hide in a corner. Thats not possible though so i put on my brave face and smile as hard as that is some days. Mum comes first and we do everything to keep her as happy as she can be. x

 

[petals]

I agree, my mother was diagnosed 4years ago. My life has never been the same since that day. The most painful thing is that she is abroad and I get to visit her every year. The guilt feelings and the impact of this illness on the siblings has been so devastating. It is so painful to watch the slow deterioration and the desperation of wanting to cling onto the positive memories of the mother that was before this illness.
I value each day she is still around us and the Mother's Days are becoming more important than before because that is when I can share with everyone about how much I love and being thankful to her for bringing me up and making me the person I am today. When it is possible to speak to her on the phone, all what I tell her is that she is the best mother and I am so proud that I am her daughter. Mom loves to hear those words because they are simple but meaningful. I am keeping recordings and pictures of her when she is happy, writes letters to her just about my love for her and how much e I miss her. I get so much comfort from writing these letters. I ask the carers to keep reading them over and over. Anyone who visits, I pass these messages of love. The feedback I get is that mom responds with a smile. I know that she may not hold onto everything, but repeating those words, does make her happy. I may not see her response all the time, but when she tells me sometimes that she loves me too, I have a perfect day. One can feel sorry for oneself at times, but now I am directing my anger away from this pain by doing voluntary work as dementia advisor and I am also in the process of helping develop dementia services in south africa where I come from. This is another way of ensuring that I can keep her memory alive beyond this alzheimer. I can support other families who are experiencing what we are going through now. This has helped me therapeutically but I know that each person is different and this idea may be too much emotionaly to manage. I have shed all my tears and have nothing left inside me. I have no idea how long this can go on but I want to do something meaningful whilst mom can still recognize and appreciate that this will be something that will make her memory be kept alive. This is my desperation of wanting to hold onto her, but something good I hope will come out of this in her honour=she always helped other people and this will be a fitting tribute. My mother is now 72years old.

 

[carolmay]

dimentia hurts more than the person suffering from it

My Father has been suffering dimentia since he had a stroke 5 years ago after the death of my younger sister, we were told he wouldn't survive the stroke but he pulled through and as happy as we all were at the time I now wish the stroke had taken him then, some people may not understand how I can say something like that about my dad but I have to watch the torment he suffers, the anger and frustration he has, and the tears he cries because he doesn't know whats happening to him.
My Mum died a year after dads stroke and she told me she didn't want to live anymore because she couldn't cope with the way dad was, she wasn't a well person to start with and the constant turmoil dad caused with his mood swings and nastiness was just too much for her so basically she gave up. I was there when she told the doctors not to revive her when her heart stopped, it broke my heart and I begged her to fight on, all she said was " I'm too tired love ".
So now it was left to me and my brother ken to look after dad but I was by this time an invalid myself so I was limited in what I could do. over the next 18 months my dad got more aggresive and demanding and my poor bro was stressed to death " literally " he was out on a darts night with my husband when I got a phone call to say he was dead, a massive heart attack which was caused by hypertension. so as you can see my dads dimentia has also done for my mum and my brother.
Dad is in an MSI nursing home now but things aren't going well, if i go to see him he begs me to bring him home, he cries, I cry, then he gets nasty with me and swears and calls me names which usually results in my husband bringing me home.
at the moment dad has been given extra medication to keep him calm because he hurts himself when he starts throwing furniture around, he's still a very strong man so I suppose the nusing home has to do it for his own safety, but when I last went to see dad he wasn't responsive at all and when he did talk he did'nt make any sense.
I am constantly on a guilt trip because he's in a home, I need to see him because I love him but when I go it makes me feel worse, if anyone out there can give me advice on how to get through this I wouldn't be able to thank them enough, I desperately need some help but don't know where to find it, I'm hoping this site will help me if only to act as a sounding board for all these pent up emotions.
Thank you for taking the time to read this post.
God bless .
Carol