Photos/Video and some philosophical ramblings

[jc141265]

Just wanted to ensure others don't make the same mistakes we did.

Although you may feel as though you don't want to remember your loved one as they were once the dementia starts taking over and so refrain from taking photos and video.... Or alternatively you are concerned about dignity for once the dementia starts taking over, your loved one may no longer be able to pose for photos or you may feel that perhaps you are taking photos of what they cannot give permission for....If you can take photos or video do so.

Our mistake was thinking as Dad went downhill how bad he was and how terrible the situation was but then later down the track, you think of that same stage and think how marvellous he was back then, how you wish you could remember how good he was back then compared to where he is now. What seems bad now is nothing compared to where they are headed and although I don't want to be all doom and gloom I really don't want others to make the same mistakes as us and not keep a record of their loved one through each stage.

There are so many levels of interaction that we don't realise. Even now in Stage 7 I wish I could capture those moments where I get a smile from Dad or a laugh but now he is in a home I find myself questioning the appropriateness of taking photos and so refrain. I did take video of him when he was in respite and noone had any objections, it was uncomfortable to do so, but if I ever have children I would love for them to know my Dad and not just the good stuff, my Dad even when he is dribbling is my Dad and it is my ethos that we face the bad with the good.

The philosophical rambling stuff that you should just ignore if you don't like my usual blatherings:
I know some will disagree but there will be others who see the world like I do. For example there was a horrible story about abused children on 60 minutes last night and my partner knowing how much that sort of thing upsets me because of my own difficult childhood asked me why I watched it. I said to him, that somebody has to, somebody has to listen to their story, if nobody listens it will just be brushed under the carpet and forgotten, I will sit here and watch it so that I can tell others and warn others. Same with dementia if nobody wants to know the bad stuff if nobody ever faces it it will continue to go on. It is not until a large amount of people can no longer brush it under the carpet that anything will be done about it. I realise that many don't have the strength to face the horrible stuff and thats okay, but for those of us who do force themselves to face the pain, don't feel that you are doing so for no reason except to hurt and feel pain, you are doing a good thing. You are the people who recognised what Hitler did to the Jewish people and objected, you are the people who don't just accept the situation but fight for a difference. It can be a lonely path with little reward but somebody has to do it, if there is going to be change. Last but not least, you are keeping your loved one company through this nightmare.

 

[Brucie]

There are - as always - many aspects to this business of taking pictures.

I have taken pictures throughout Jan's long winding road of decline.

Some that I took in the last months that she was with me at our house in 2001 really hurt now, while at the time it was all part of the course and I was in it with her. But I can look back at the pictures now and say to myself - now - that when I was forced to lose her to the care home where she now lives, I was already way past the time when I should have let her go, for her sake.

Likewise, the pictures of when she was at the assessment centre before going to her care home, oh, she became so thin in her face after they had let her fall. I can compare those pictures with her face now [she has gained 5lb in the past two months] and reflect on how well the home cares for her.

Most of all, I can look at the pictures and see Jan as she is, not how I would like her to be - i.e. as she would be without the dementia.

It is about her, not about me.

The fact is that she does have severe dementia, and it does no-one any good to ignore that fact.

I have the pictures of us together before dementia crippled our life together, but I also have the pictures since.

Jan is as she is, and to pretend or wish otherwise is to take away from her as she is now. She deserves to be related to as she is, a person with severe problems, but also as a person with a past and more importantly, a person with a present.

Her future will unfold as it happens.

In summary, pictures are important:

• they put Jan's life in context, throughout
• they enable me to make comparisons of the effects of her care
• they show that, despite everything, life does continue, and there are happy moments
• they show she is still cared for, that she is not disregarded because life has changed so drastically for her
• they show me our changing relationship over time
• they show Jan

 

[jc141265]

My PM to Brucie

On Brucie's urging I have posted my original private message reply to him here:

For fear of monopolising the threads I'll reply to you here. Thanks for that post, you put it in words better than I. I too use the photos for comparison, Dad has put on weight since he's been in a home and sometimes when I think he must have gone downhill so much in the last 6 months I only need to look at photos of 6 months ago and I can more easily make a comparison. Photos are important in this disease I think because your head keeps so many pictures of your loved one, but doesn't time and date stamp them!
I am also glad that you too recognise the person that they are now. I had a cousin remark to me on the weekend that she 'just wanted to remember Uncle Tom like he was.' to which I replied 'I can understand that' while the voice in my head said 'What you mean is that you don't want to visit him cos you don't really give a damn.' and then she said to me that that must be really hard for us to forget who he was to which I replied "I have forgotten who he was, and who he was is still there and I happen to like this man who is my Dad now as much as I did the old Dad"...needless to say she moved on and started talking to other people! Whoops was I rude?? I don't care.
People seem to forget too soon that they are still people with a past and present as you say, whilst I am sure most of these people who forget would be hoping that they were still treated as people if they were in that situation.
Anyway just wrote to say thanks, and to let you know that Jan is lucky to have you

 

[Brucie]

... and this was my reply to Nat:

Hi Nat

your posts to TP are all extremely valuable and I do encourage you to post these sorts of things to the public forum!

I think the power of TP is to have all these contentious things out in the open. There are so many who seem to benefit from realising they are not on their own in what they do/want to do.

Also I get furious and far less polite than you are regarding those who "want to remember 'them' as they were" - better phrased as "want to forget them now".


Anyway just wrote to say thanks, and to let you know that Jan is lucky to have you

Ah, it was always mutual. I was blessed to have her!

Likewise your Dad is lucky to have you!

 

[cyndiwinston]

Hi Brucie and Nat,

I am new to this site. My Grandfather has dementia, he is 85 and still lives at home with my 84 year old Grandmother. She had an angioplasty which led to a heartattack 2 weeks ago. My parents, aunt, and I are taking turns Grandpa sitting. It has gotten too much for us and my Grandmother needs therapy to get better. She is one strong woman! My parents have found a home for my Grandfather that caters to people with dementia and my Grandmother is pleased with it too. He may stay there for one or two months. I know my Grandparents would prefer to be at home together. They have been married thirty-five years.

What I wnated to say is in reading your posts I could feel the love you both have for your spouse and father. I wanted to tell you that even though my Grandfather is not all there we have a wonderful relationship. We have become very close over the last five years. (They relocated to Las Vegas from Florida) I feel pure love for him, these have been the best years for him and I. I cut his hair, trim his nails, shave him and have changed his under garmits. I am worried about this home he is going to. I hope he can accept it and flourish there. The tables really do turn, don't they?

While my Grandmother was in the hospital he always asked for her, where is my Helana? When is she coming home? He also said such beautiful thing about her too. He wasn't used to the changing of people at his house. One night my 9 year old son and I would stay, the next 2 days my aunt would stay then me again. My parents would come over during the day too. He asked me if my name was Betty, he has always known my name until then and he used to ALWAYS ask me where I worked every time I saw him. I don't know if he is going downhill or is just confused by the change.

Thank you for letting me go on and on. It was just so beautiful to read your posts, I wish my Granmother had a computer.

 

[jc141265]

Thanks Cyndiwinston, no doubt I frustrate a lot of people on here because I am lucky that I got past the resentment that dementia can bring...actually I don't think I ever suffered it. I completely understand why some do however and my heart goes out to them trying to struggle on with mixed emotions. I do suffer at times from hurt, when my Dad behaves meanly but am able to let that go thankfully.
You when reading my post understood my feelings so well, I think the phrase you used:

I feel pure love for him

said it exactly. Its a very weird love to discover...I guess its what parents should have for their children, unconditional love.
Now I'm not saying my father is a saint, I just spent the last half hour with him reaching out and trying to smack me in the face, but I understand that this is not him, but due to whatever it is he is seeing, he appeared to be hallucinating or having trouble with his depth perception tonight. And thats not saying he was a saint before this disease struck either he could be a right so and so when he chose. But somewhere somehow I decided none of our history mattered except that he did his best to be a good Dad all of my life and now it is time for me to be a good child. I can't really explain it any better than how you did:

I feel pure love for him

I guess I came to the realisation with Dad it was pointless harbouring resentment or hurt against him because none of it mattered anymore, I would not have time or be able to resolve any of it, I'd be better off just letting it all go.
I hope your Grandfather not knowing your name didn't hurt too much, just believe that deep down inside somewhere he knows. It could very well be all the chaos and confusion in his life right now like you said, but if he has dementia then it is almost inevitable that he will forget your name, but if you stay in his life every now and then you will see a sign that he does remember you or at least know that you are someone important to him.
Thanks again for you kind words,

 

[cyndiwinston]

Hi Nat,

Thanks for your kind words.
I saw my Grandma this evening. My parents took her and my Grandpa to his new home. She paid for 2 weeks, I think that made her feel better (psycologically) instead of paying for a month or two.

I didn't feel hurt that Grandpa forgot my name. We have a good relationship, we laugh a lot he says very funny things sometimes and gets me laughing. He laughs at me a lot too and tells me how funny I am. He is not an angry person. He has moments when he swears but that is not too often.

My Grandma would get angry and frustrated with Grandpa, she had a lot of work, between changing bedding everyday and caring for him too. This is a good thing for her to get some rest.
Can you tell me the difference between Dementia and Alheimer's please.
I am not familar with this site so I just happened upon this page and saw your reply.
This is a wonderful site. It seems most everyone is in England or Scottland. I am in the USA.

 

[Brucie]

Hi Cyndi

welcome to TP!

Although this site is based in the UK and run by the UK's Alzheimer's Society, we do get lots of people from all over the world joining us in conversations. That is great because Alzheimer's - and other dementias - knows no borders. The available care regimes and packages, and medications will vary from country to country though!

Can you tell me the difference between Dementia and Alheimer's please.

Check out the factsheet: http://www.alzheimers.org.uk/Facts_about_dementia/What_is_dementia/info_dementia.htm

Basically, Alzheimer's is just one type of dementia, though it is the best known and most common.

 

[cyndiwinston]

Thanks Brucie and Nat

Thank you Brucie and Nat. You are both so loving and great with words too!
I am 42 years old and went back to school 4 years ago part time. I had no idea what I wanted to be. I took a lot of classes towards an associates degree. My aunt started having complications from diabetes and had to have a toe removed. I learned how to give her antibiotics through her pick line and at the same time my Grandfather was declining. That is when I decided to become a nurse. It is ironic that during the same time I found a tape of my aunt, my sister, and I when I was five years old and my aunt asked me what I wanted to be when I grew up and I told her I wanted to be a nurse. She asked me why and I said because I wanted to help people.

I am not one for blood and guts, but the rest doesn't bother me. I am also a Christian and I feel like I have to help people know the Lord. I was with my Grandfather when he accepted the Lord, so I know i will see him again.
I am not sure what field I will go into but I have thought about geriatrics or pediatrics. Both ends of the spectrum. I have also thought about Hospice work, I have never been good with death growing up, but somehow I feel I could help people make the difficult transition. I have a few more years of school to go before I can become an RN. Thanks for letting me ramble on.

Love, Cyndi

My son is nine and is so helpful and wonderful with my grandparents and aunt. He is my little angel. :^)

I have a co-worker who's mother is in a home and has Alzheimer's and Parkinson's.
She is in her 60's and not doing too well.