I admire Padraig and how he cared for his wife..I understand.. I think..why he took her away from the NH to care for her alone..
Do we battle or do we be supportive to them I am asking myself now .
From a book I am readingSupporting someone who has a dementia has to start from the perspective of the person experiencing this condition it is a misconception that the family member or friend only is on the journey , while the person who has a dementia is largely unaware of the journey being travelled . primarily it is the person with a dementia 's journey . As a family member or friend we need to go on this journey in tandem with them --- not the other way around
I guess the posts here show a lot of different expressions and interpretations of what love is.
I can see all sides Gigi. I would also say the dynamic of the relationship also plays a big part; husband/wife, parent/child.I admire Padraig and how he cared for his wife..I understand.. I think..why he took her away from the NH to care for her alone..
But I also agree with you..
We're all different..our relationships..however loving..are different...
I am so thankful that while Eric knows he has "AD"..he has no insight into what that may become..and for his sake.. I pray daily that he will not have to venture into the latter stages of the disease..because I know the man..and it would break my heart to see him like that..
But it may happen..if it does..I'll do my level best to care for him myself...because I know the man...
Love Gigi xx
ps..I would put him at Stage 5..moving into 6.. at the moment
but I personally couldn't justify to myself the prolonging of what I perceive (and know they would perceive) as misery.
When you say ''They" Your presuming everyone with dementia feels they life is a misery , think that can be called as generalizing all people with dementia think the same .(and know they would perceive) as misery.
I'm battling for myself really. I'm not ready to let her go yet. I know she would want to die rather than keep going on the way she is. She had expressed her views on being kept alive on machines very clearly when she was well - she was completely against it. She's not on a machine now and I won't do that, but I can imagine how much her current state of affairs would horrify her. But I'm not ready.
PadraigBeverley, May I clear up a misunderstanding. My wife was in a very bad way when I removed her from the NH. In the first months after I had her home she was on morphine. I held her hand and told her it was OK to let go and be with her parents and our late daughter. She was bed ridden when I took her home for eight months before I dressed her, and took her out for walks in the wheelchair. By this time all her sores had vanished, the infection in her mouth had cleared up, she was eating and drinking as much as anyone else. In fact she was heavier than she'd ever been, from under six stone to over eight and a half. She was eating a full bowl of stew, carrots, parsnips, broccoli and chicken, finishing it off with a caramel wafer and a glass of juice, in half an hour! When I started it took up to two and a half hours to feed her. Twice a week when I took her to the supermarket to shop people got to know her, she would smile, her lips would move in an attempt to speak.
Photos and a DVD show her happy and content in the final years, as for me, the stressful and painful time, was when she was in the NH and the first year at home, undoing the damage done with medication and lack of proper care. For me the important thing was to dispel her fears.
Now, coming up to 77, more than ever I understand the fears of 'being put away' having seen what happens in hospitals and NHs. We are very much at the bottom of the heap and on our way out. I feel very lucky and privileged to have been able to give the loving care to my wife in her time in need. Oh, how I miss her, but it give me a warm feeling thinking of these last years we shared painfree.
Should I be unfortunate to end up with AD I know I wont be so lucky and would wish the end stage to be short.
PadraigBeverley, No need to apologize, I'm in no way offended. Frustrated and sad at seeing all the same things being repeated again and again. It's as you say "the situation we find ourselves". Time and again I see the carer being kept out of the loop when it comes to treatment. When my wife had to go in to hospital for the first time, she was given Temezepam without my knowledge. She'd broken her arm, dislocated her shoulder and injuried her hand trying to break her fall. After three weeks they failed to notice the injuried hand, till I pointed it out! It was just as well that I discovered about the Temezepam after she left hospital, because had I'd found out, someone would have required treatment after I'd finished with them. My wife was always a very gentle quiet person, as I lifted her up after her fall there was only a quiet whimper.
It's no surprise that our loved ones become depressed, anxious and agitated by the way they are treated. I know I felt that way when my wife was in the care of others, as I said to one Doctor "You try spending a week in hospital or a NH and act out being an AD patient!"
I'm sorry to ramble on, maybe it's best I moved on and shut my mind to AD. My journey is finished, but at least I busted through the system's brick wall. Padraig