Various!

[EDITH]

Hi Amy,

The final paragraph in your posting to Brakes, in my mind said it all, I couldn't have put it better myself, but it is exactly the way I feel about my mum. Just you keep on thinking that there may be somewhere within her, some sense that you are her daughter, and as you say, it dosent matter anyway because you love her, and thats why deep down somewhere inside your mum, there is some recognition of you and that is exactly why - because you love her - and your mum will always know this, of that I am convinced.

Take care
Edith

 

[EDITH]

Thanks for that Edith, I need the boost every now and then ! Wow, you have been hanging in there a long time with your Mom. My Mom in 76 and had AD about 8 years. She is in the advanced stage now but is just now showing signs of needing extra help She is a tiny thing, only 80 lbs and about 4 foot 4" tall and I wonder how such a tiny body can keep going. I just can't imagine another 8 years of her declining. Well, I know I'm jumping ahead and should do as Brucie says, live one day at a time.
I'm so sorry your Mom is getting worse, I know I will feel the same when I get there. Take care.
Hugs,
Debbie

Hi rummy, You are welcome. Yes I have been hanging in there for a long time but like you when you say you cannot imagine another 8 years of your mum declining, well neither could I have imagined another 8 years when I had gone through the first 8 years. But one simply gets on with it and I have found that the further advanced mother became, the easier the caring became mentally, I have found the latter stages of the disease far less stressfull than the early stages, or the stages when everything was half and half, neither one thing or the other. Although as I mentioned to you in a previous posting, the hardest most difficult stage of all is the present situation as mum is slowly coming to the close of her life,right now the difficulties of the past l6 years seem to simply fade into oblivion

What Brucie says is true to some extent, live one day at a time. But we wouldn't be human if we didn't think to the future.

Kind Regards
Edith

 

[ludwig]

Edith,
I dont have a problem at all with your comments. When you get hit by this thing you have to muddle through as best you can, making decisions that you think are right and often turn out wrong though with the best of intentions. Its only really when you've had some experience that you realise theres much more help out there and lots of people to talk to. It really did move me to tears the first day I read this site. If you could only wind back the clock.............

The situation with my mum is very difficult. Her three kids are her only close relatives. One lives close but has her own business, is lead carer (we employ a team of daytime/weekday carers), has a family and a husband with MS. She has lost over half her business over the last year due to the time spent with Mum. The second lives close also and has a very demanding job, though is single, has never had a great relationship with Mum so is more of a pair of hands than a sympathetic talker, nevertheless she is main putter to bed and soldiers on. I have a family but live 65 miles away or 100miles from work. I do the finances and odd jobs and am there most weekends but cant take the family as there's no room to stay, but they are very supportive of my efforts. My Outlaws are wonderful thought they are in their 80s now and failing slowly. They live at the other end of the UK.
All our lives are on hold and have been for over a year now.
The question then is at what stage do you put mum in a home? Our provisional decision is when she no longer knows us, this happens to some extent now, but we're a little way away from decision day as yet. Also she is moving towards requiring full time care, which we can not provide and is just not realistic in her home. There is also the safety aspect to consider. We 'lost' the chip pan months ago but she has had plastic plates on fire etc etc.

We're not at decision time yet but that is our thinking at the moment. Of course circumstances change as might our decision.

Keep smiling
Ludwig

 

[Amy]

Hiya Ludwig,

The decision about a Nursing home is such a difficult one to make, and I have said previously on here I think it is because society has the wrong image about caring for the elderly and those with dementia. The Nursing Home isn't really about whether your mum knows you or not, it is about what is in the best interest of her welfare, and other members of the family. I may be wrong, but I think your reasoning may be that if she doesn't know you then she will be hurt less by the move, and you will be able to cope better with it. It's a painful step whenever you take it.

If your mum is setting things alight, or endangering herself and others in other ways, then your first duty to her is to ensure that she is safe. No guilt, no failure, you are doing what is right in the circumstances that your extended family is in.

Take care.

Amy

 

[Lynne]

Hi Ludwig,

I'm so sorry to learn of the convoluted situations you & family members find yourselves in as a result of you all doing your best to help Mum through this awful time. I know the decision to look for a residential home for your mother is not one which anyone takes lightly.

I often think that as we (on TP) post messages and read about each other, we have to try to remember that we ALL give a "potted history" with only about 5% of the background information over & above the bare bones on the AD-patient's state of health & mind.
And why not? After all, we start out as strangers to each other, with only this horrible disease in common. Time & empathy often bring us closer together (in this strangely anonymous way) but we'll still be unlikely to realise that ripples of devastation spread far beyond one domestic home, and often through several, as sons, daughters, siblings and grandchildren struggle to cope with their own lives, as well as help out with the unexpected strains of dealing with the effects of AD/Dementia.

Or we read of the other extreme, where there is only one partner or carer struggling on their own. Sometimes they ARE part of a larger family group, but the others do not or cannot share the load. Sometimes it is because of geography (Extreme example - my only brother lives in Australia!) or other family committments; sometimes the 'reasons' aren't so clear-cut. All we can do then is, hopefully, offer what practical advice we can regarding the specific difficulties being experienced.

Best wishes

 

[Amy]

Hiya Lynne,

Your posting makes me wonder if I have inadvertently posted something that could be misunderstood, if so I apologise, it was unintentional. Ludwig and family sound to be doing such a good job. I do feel that we have to start promoting Nursing Home care, as those of us who have had to make that decision shouldn'y have to feel that we have failed. That's all I was trying to say.

Amy

 

[ludwig]

Dear All,
I joined this site to get advice and share experience.
I completely accepted Ediths point of view and responded with our thinking to date. Bear in mind Edith has been there, we haven't yet so can only relate this as thinking to date. When we get there, things might have changed so we do something different. I think everyone should be able to express a view (in the right way of course) because none of us know all the answers. I can't see anyone in this thread expressing a view that needs anything even approaching an apology.

Incidentally we are not 'doing a good job', we are muddling through as best we can, just as many people do and often in much worse circumstances. We are certainly fortunate in collectively accepting the debt (in the broadest sense) we owe our mother when I know often this is not the case. However I could murder either/both of my siblings at times - an entirely mutual feeling of course!

Keep smiling
Ludwig

 

[Lynne]

Anybody ...

Please, my post of 10/02 wasn't aimed at anyone or any particular situation. Well paragraph 1 was, I suppose.

However, I'm afraid I just went off on a little ramble all of my own in the rest of it.
Sorry, my mind is spinning a bit at the moment, with a variety of problems (not all connected with AD)

Generally, I like plain speaking, and try to be that way myself. However, 'speaking' by email or internet group forum posts has the disadvantages of no facial expression or body language to temper the words used, and can be open to misinterpretation, especially if the reader is feeling over-sensitive about the subject. (Huh, hands up anyone here who isn't stressed & sensitive a lot of the time? )
Even the little smileys can be dodgy & regarded by some as flippant.

As this is the second time I've explained myself today (for yesterday) please ignore anything else I submitted yesterday.

Best Wishes

 

[Amy]

Hiya Lynne,
I'm too into speaking my mind, but I certainly wouldn't want to offend anyone, and I suppose I didn't quite understand your ramble, so just wanted to make sure I hadn't put my foot in it. Course we won't ignore everything else you said yesterday - the jokes are always good!

And Ludwig, don't put yourself down. There is no rule book about how to deal with this illness. The fact that your family are all hanging in there and supporting your mum means that in my mind you are doing a good job. If the time comes that you make the decision for her to go into care, you will still be doing a good job. Muddling is good!

BFN
Amy

 

[ludwig]

Amy,
thank you for your comment. The trouble is you feel so inadequate, however much you do and when Mum is no longer here we'll all be racked with guilt anyway. There is so much to try to understand, so few clear cut answers but a terrible responsibility. You do not have the time to sit and think with all these plates spinning.
One of my observations on life in general is that as you grow older you realise how desperately little you know of anything despite an abiding curiosity and an interest in lots of different things - how true this is of AD/Dementia!

This website is so good because we are all in similar positions yet can talk with some little knowledge/experience completely anonymously - catharsis indeed!
Now being a site veteran of nearly a week and having got very good advice on one issue, I wish I'd known about the site a year ago!

Keep smiling
Ludwig

 

[daughter]

Hi Ludwig,

"One of my observations on life in general is that as you grow older you realise how desperately little you know of anything despite an abiding curiosity and an interest in lots of different things - how true this is of AD/Dementia!"

How very true, and hence my signature:

"The more I learn, the less I know"

Best wishes to you and all the other muddlers out there ,

 

[Amy]

Hiya Ludwig,

when Mum is no longer here we'll all be racked with guilt anyway.

How I know the feeling, having had to place my mum into a Nursing Home in January. Guilt about not having to worry about her and dad so much, guilt at walking away and leaving her in the home, guilt about being able to walk away. Guilt about getting on with my life whilst mum is in a place with strangers who don't love her. I know all the guilt is futile, but there's always that nagging thought "If you really loved your mum you would...."
Does anyone else get this?
Amy

 

[Norman]

Hi Amy
I have looked after my wife for 7+ years she has AD.
After many battles I now have some help sitters and personal care.
I have been told so many times that I should not feel guilty about going out and leaving Peg,but I still do.
My feelings are a mixture of sadness,guilt ,pity,lonliness and frustration I cannot define the feeling really.
I know that none of this is what I want,I want my life,I should say our lives back.
I don't want to leave Peg with strangers,I want her to be with me as we used to be.
But I have to escape sometimes,feeling very guilty,but if I did not get a break what would happen then?
We all know the answer to that one!!
How can I not feel guilty when she looks at me and says"what time will you be back"? Although she cannot tell the time any longer.
I do try to practice what I preach ,I am sure it is the only way.
Day By Day
Norman

 

[Brucie]

Hi Amy

Does anyone else get this?

perhaps best told with a Brucie story, hot off the presses from lunchtime today.

Today, being Valentine's Day, is a difficult day for a spouse with a partner who has advanced dementia. Jan's home runs a special lunch each year and I have always shied away from being there until afterwards.

This year, the manager asked me to come for once, and, ever the weak one when an attractive woman [Aaaargh, how non-PC ] asks me something like this, I agreed, but with strong misgivings.

In the event it was actually very nice, and I'll post a separate thread elsewhere as I always think it worthwhile posting positive things about care homes.

Anyway [Brucie stories are never short], at the end of the meal, all partners were given a Valentine's card, made by one of the superb staff, and inside was a poem she had written:

I reside at Homefield, but I know you're always there
Because I know you love me and I know you really care

On this special day which comes but once a year
I want to say I love you, so darling, have no fear

Even though we live our lives and spend our time apart
I want to say I love you, and that's with all my heart

I guess you had to be there, but I defy anyone in my position not to get a lump in the throat.

Anyway, to get to my point, finally - as I was leaving, I was saying goodbye to the other spouses who had attended, and we compared our reactions to the card - all the same. One, whose husband is about Jan's age, said to me "aren't we all softies". I said "that's why we visit regularly, if we weren't, we wouldn't".

Yes, Amy, we do all get the same thoughts.

"If you really loved your mum you would...."

... do exactly what you are doing. If you didn't, you wouldn't, and would walk away from such a painful thing.

 

[Amy]

Bruce,
You've made me cry - its easier to be down on ourselves than be kind about ourselves - for me it seems like some sort of defence mechanism.
Amy

 

[BeckyJan]

Norman and Brucie:

I want to cry - you both make me feel more sad but its good for me as at least I know I am normal!!!!! (that sounds crazy but hopefully you understand).

Norman: I have been there today especially and other days too. Its Val.Day and it makes it all worse.

Best wishes to you all struggling or whatever BeckyJan