Has caring changed you?

[daughter]

Since my Dad got Alzheimer's (or should I say that it got him?), and him moving into a Home, I have noticed an aspect of me changing.

At the beginning I was very wary of the other residents, frightened of what they might do and not knowing how I should react. After nearly a year I find I'm not only more relaxed but seem to be able to do things I didn't think I ever could.

For instance, a woman (call her 'Mary') was being asked by a carer to go into the lounge and, for whatever reason, she didn't want to go. I was just passing, holding Dad's arm, so I put out my other hand and said, "Come with me, Mary?" And she did! She even thanked me when we got into the lounge, while the carer looked on!

Such a little thing, I know, but the point about it is that, ever since I can remember I've been slightly nervous of people with any kind of mental disorder. Now, here I am getting stuck in and starting to enjoy it!

Actually, the same could be said of my Mum too, when the music is played she often gets some of the residents dancing now, whereas, when she first visited Dad she was also nervous of them.

I'm not saying hey, I'm great or anything like that, because I still certainly could not do some of the less pleasant jobs (no pun intended) and have much admiration for those that do. I just think that it goes to show that fear is often present because of a lack of familiarity. Anyone else found that caring has changed them in ways they never would have imagined?

 

[Norman]

Hazel
caring has not changed me because I worked in a caring professiion.
I think what you say shows why people back off from any sort of mental illness,scared of the unknown.
If more people could have contact with this sort of patient they too would change their attitude and thoughts as you have done.
Warm wishes
Norman

 

[Brucie]

Hello Hazel

spot on!

yes, I have long conversations with residents at Jan's home now. I'd never have done this in the past, but I have had to adjust to Jan's condition, and the new empathy I have gained is transferable. These are dear people, very vulnerable, and they seem really to gain from our engagement with them. I also find that their relatives [the ones who visit often] are really pleased when I also say hello to their loved one when I arrive and a visit is in progress.

I know other relatives do the same for Jan and we have to an extent become an enlarged family.

I find that I can also spot things that the staff may often miss and I can draw their attention. As I am a visitor the staff jump to, where otherwise they might have waited a while.

Strange the way life takes us!

 

[jks]

Caring has made me take stock of what's important to me, and let the rest go.

It made me realise that with the best will in the world, there are still only 24 hours in the day, and hey, who cares if there are cat hairs on the carpet and dirty dishes in the sink. The vac willl be out, the dishes will be done eventually. I want time with my Dad.

I might have to spend ten minutes ironing us all a shirt in the morning....but there again, we could all go to work a bit crumpled on the outside as well as the inside.

I could be doing housework now, instead of being here with you lot....but the strength and comfort I draw from your posts keeps me sane. I never realised that just knowing that other people were going through the same as you would help me through the bad times. I never knew so many people would be there to support us.

My Dads AD has opened up a new world to me. I might not like it, but I'm plunged into it nevertheless. A funny old world, where so much has been torn away, leaving us exposed and vulnerable. I have temporarily stopped making plans for the future, and started living for 'now'.

Caring for my Dad has revealed parts of my character that I've never seen until now. Some good, some not-so-good. But one laugh out of him, one conversation that doesn't end up about the 'people in the attic' or the 'three strange men that live in the bathroom' makes my day. Everything else can wait.

jks

 

[Sheila]

Yes, I know just what you mean. As you become more familiar with the illness, the fear of it is replaced by the need to help those suffering. Love She. XX

 

[Dianne]

yes, i agree. Visiting Dad at first we were wary especially our youngest as she was only 11 but now we are aware; it makes all the difference. This is why I think we all need to do our bit to make people aware, they are not 'a bit loopy', they are someones Mum, Dad, Wife, Husband etc, it is not their fault and they need reassurance and understanding. There but for the grace of God and all that...

It has made me realise just how lucky we are and that 'normality' can be taken away so quickly that we need to cherish every minute and live life to the full.

 

[daughter]

Thank you for all the replies. "Strange the way life takes us!" you're right there Bruce.

I just wanted to add that it was my Mum and Dad's wedding anniversary today. Dad's wonderful Home had prepared a surprise tea in the small lounge. Food, wine, cake, music, photographs, decorated room, the lot. My son, daughter and young granddaughter came too and Mum was over-whelmed. Dad was wandering in and out (it was sun-downing time after all) and bizzarely peeping in the window set in the door, waving to us all inside. He enjoyed watching his great granddaughter dancing (she had a great time!) and called her 'curly'!

One bit disturbed me, when I was with Dad on one of his walk-abouts through the corridors. He looked in on a man laying in his bed and said "Is this what it comes to?" A horrid thought that he was actually understanding what will happen to him. I chose to believe he was feeling sorry for, and commenting, on the man he saw.

Good bits / bad bits.

 

[rummy]

You've all said so much and I must commend you all for being such wonderful human beings ! Maybe we're given the task of care takers because we have the heart, stamina, compassion, and soul for it. This has changed me in that I am having to be more assertive and strong than I have ever been before. The old saying, "that which doesn't kill you makes you stronger" is my credo these days! I do have to work at it though because there are days I just want to curl up and bawl like a baby. Being able to unload here at TP has helped me SOOOOOOOO much!
Debbie

 

[jc141265]

Only thing we are promised in life...

I've said this before on another post but will put it here too as this is an appropriate thread. The ways caring has changed me:
1. I have become an unbelievably stronger person;
2. I have learnt what true compassion is;
3. I have learnt to cherish the truly happy moments and take nothing for granted;
4. I have developed a bond so unbelieveably close with my father, despite his apparently disappearing (mentally) in front of me, a bond that transcends words and gestures;
5. I have learnt what makes a true friend;
6. I have learnt what is important in life and am beginning to be able to let the little stuff go;
7. I have learnt how to understand others in similar situations and as a result will hopefully be a better friend, a better person and be able to help others;
8. I have learnt to be more assertive, as I have had to stick up for not just my own welfare but my father's;
9. I have learnt to seize the day and not waste a second;
10. A weird one, but I was always afraid that if I had a disabled child I would reject it, but now I understand that love goes beyond all this and so I am no longer afraid of what I might do if this happens, and I now am comfortable with pretty much any person suffering a disability and value them as I see being 'able' does not make one better;

I guess that last one, is a bit like what hazel was talking about. Another thing which I heard on TV today, someone said "The only thing in life promised to us is death" I guess Dad's illness has put this fact right in my face and like the guy who said it, I too take this thought and make the most of every second of my life, never take anything for granted (i.e. points 6 & 8).

When I was a kid I had a difficult relationship with my mother, when I was 18 I was raped, when I was 21 my first true love got another girl pregnant, when I was 25 my father got Alzheimers, when I was 26 I had a cancer scare. Each time I used to think of the old saying, things can only get better, but each time I was proven wrong, things could and did get worse. I've had to learn not to dwell on the bad stuff and to make the most of what i had. If you dwell on the bad stuff, it just sucks you down deeper and deeper. I've learnt now not to expect things to get better but to be prepared for things to get worse (and this is an important lesson to learn when dealing with Alzheimers) but don't let it suck you down, be ready with your armour and just deal with it. (Thats not saying you won't get beat up pretty bad by the expeerience.) Its already been said here but I'll say it again, what doesn't kill you just makes you stronger and my god I'm getting so strong!

So stick that in your pipe and smoke it Alzheimers!

 

[islandhighway]

what a journey we all make together...

I just found this site a few days ago and thru reading differant messages have finally found a safe and nurturing harbour in my storm.. My husband, 2 boys and myself moved from alberta ,Canada to the west coast of B.C. 4 years ago (after my mom died) to look after my dad (with serious health concerns). In a few months he was diagnosed with frontal lobe dementia. he was managable. 2 years later lost his drivers licence. He was able to get a learners permit and took lessons for 4 months, took the road test again and failed. You get 3 tries here but if they think you are an unsafe driver, they will not let you test again after that. They said he was fine on quiet streets, but was unable to multi-task in the busy intersections.....They denied his renewal of the licence, was and still is very angry, no use telling him he is a really bad driver and was the safest thing, that he lost it. I was with him 3 times when he blew thru stop signs, i couldn't believe it. He will not listen to me and make some lame excuse why it happened. we never let our 2 boys ever drive with their grand father after that....He tells everyone that will listen, that he knows what STOP means .Was also threatening to sue the government ...what a nightmare..he can be my old dad once in a while .the other times he's the last person you would ever want to be stuck with, a real Jyckell and Hyde.... He lives in a careaminium and it suits him well enough for now..... He used to run a large business and now is content to still try to run things. That to is filled with sooooo many problems. I am employed as his memory (and also run him around to do errands and app., but when you bring up facts and figures or conversations (which i am supposed to do), if he doesn't remember it ,then it never happened and therefore you are mistaken or lying....He is like the squirrel in a wheel going round and round, ****** part about this, is that I am in there with him. I am getting very dizzy and really tired. I try to limit my hours of expose with him because he has become very verbally absive and paranoid. Then other times he is quite tolerable....there is such a massive swing from side to side....i just don't know when i go to pick him up each day,which side i am going to meet. My younger sister comes out once a month to give us a long weekend away..... When you talk to people, it is suprizing how many people have a family member or know of someone who is like this. To me I beleive that this is my journey between my dad and me ( the care giver)...others might try to understand, but it is like going thru labour( for those of us that have)This is between us alone and it really helps to have the support along the way....islandhighway

 

[katieberesford]

Hi friend across the sea!

Hi there.

Welcome to the journey of the AD carer.

There are quite a few folks here who are in a father/daughter carer scenario. They will no doubt respond to your thread.

It is very hard to lose your drivers licence and there have been many threads posted regarding this subject. It was especially hard for my husband who had been a sales manager for an American company for 19 years and had travelled all over the country, and losing his licence was so hard on him, it was like his independence had been taken away in a blink of an eye, so we can all relate to how your father is feeling.

I hope you post regularly. The support we all receive from each other is unbelieveable and a good source of info, what one person doesn't know other will.

Take care. Keeping posting.

Katie

 

[Nell]

Hi!
You have brought up a point that my youngest sister and I have both commented on. She is a registered nurse who has worked a great deal in both aged care and in disabilities, and I am a teacher who has worked for nearly 30 years with people with disabilities. Neither of have had any problem adjusting to the residents at Mum and Dad's Hostel. On the other hand, our other sister (who runs a shop) and my brother (a tradesman) have had much more difficulty coping with them. Also this sister and our brother often don't "get" it where the dreaded AD is concerned. Recently I asked this sister to ring Mum and tell her she was visiting the next day. My sister said "but I've TOLD her!! I only rang 2 days ago!" I pointed out as tactfully as I could that Mum can no longer retain this sort of information. My youngest sister and I are so accustomed to people with similar problems that we are aware of what Mum can cope with and what she cannot.

As you said, this doesn't make us "better" in any way - in fact my youngest sister and I often say that it has been easier for us than our siblings because we are so used to such problems.

I noticed someone else said he didn't feel he'd changed because he works in a caring profession - I think it must be true for many of us who work in caring professions.

It makes me smile to realise this is one benefit of a lifetime of caring that I never dreamt I would experience!!

Keep up your good actions with the other residents - they will instinctively recognise that you are someone they can trust.

 

[Sheila]

Hi Island highway, welcome to TP. Hope you find us of help to you. Don't underate what you are doing, caring for a loved one with dementia is one of the hardest jobs in the world in my book! Well done for sticking with it. Keep posting, love She. XX

 

[Michael E]

Actually I am trying very hard to make sure this AD problem does not change me - trying hard to keep what was my lifestyle.

To be fair I am only two and half years into it since diagnosis (probably 5 years since it started to affect my wife) The last 6 months have been more serious with being unable to leave my wife alone for more about three-quarters of an hour at a time...
Working on that problem with French social security - thought that was going to be easy from the GP and literature - easy if you pay!!!!

I do not want to be any different but must accommodate some changes in lifestyle - I am doing what I do because I want to - but I do want as far as possible to remain my own person. It will get tougher and I may have to adjust more - give up a bit more the things I like but I am going to try to keep that to a minimum commensurate with looking after my wife properly..

 

[Brucie]

Hi Michael

I think it is more of a change to oneself that is the point here. Not to lifestyle per se. Though any changes anywhere will always affect other things.

Yes of course we try to maintain our 'normal' lifestyle.

But I have found myself and many of my attitudes to have been totally changed by this whole experience of dementia - take posting on TP for example...I would never in a million years have done that previously, let alone open up my experiences for others to see - and very possibly disagree with.

At first I tried not to change at all and even two years after Jan had left our home for the last time, her clothes etc were still exactly as she had left them - she could have walked back in and picked up from where she had left off.

But time and circumstance change us - and there is no point in trying to rush that process. Let it happen as long as it does not directly conflict with what you believe or want.But I do think it is important to be open to changes. Just review them one by one and use or discard.

 

[Michael E]

Bruce hi,

Actually I was trying to say that I am trying hard not to let this change me as a person - for better or worse.... I have always had a sense that you should be kind to folks less well off than yourself but at the same time never suffered fools gladly!

My reasons for standing by my wife are of course complex and various but in the end I actually want to - so I do it. If it were someone else then I would be sorry for them but really would not want to be involved.

I think what I was trying to post was that all of us do this because it is better to do it than to live with guilt of not doing it. I think the moment the scales fall the other way you should get out. Certainly I believe you come into this world alone (except twins of course and you certainly leave alone (except disasters ) and in between you look out for yourself and your loved ones - hopefully without doing too much damage to folks around you BUT this is not a rehearsal and you must enjoy and explore all the possibilities available..... and not take yourself too seriously... my philosophy for my life.