Detached view point would help me make a decision

[concernedson]

Hello,
I'm new to this website, and could do with some thoughts from a third party, as i'm having difficulty thinking straight when i'm so close to the problem.

My mum, who was diagnosed with vascular dementia, went into a "locked door" policy care home at Xmas 2008.
She has settled now and although it breaks my heart to see her stood alone in the corridor, wandering up and down, or sitting slumped in a chair in the "big room" with all the others, its obvious that she is now safe, secure and nourished (if not gloriously happy).

My problem........ and i realise it is definitely "my problem" and nobody elses, is that i want to go away travelling for about a year and a half, before i get to old to be able to, or maybe even want to.
Mum is 81 and i am a 55yr old single man.
Her short term memory is terrible, though she can remember things from the distant passed.
She gets very confused at times, while at others she seems almost "normal".
However, when i go to visit she lights up like a beacon and is so glad to see me.
I took her outside the home for the first time 2 weeks ago, and did the same last week.
She said last time that she is so grateful that i take her out because it gives her a break (she must have been in her "normal" state that day) although she thought the 60 year old ladies at the pensioners tennis club should be at school and not out playing.
I have a brother and sister in law that also go to see her once a week on a different day to me.
I feel so guilty at leaving her alone, especially when i see the immediate difference my visits make to her.
I tell myself that as time has so little meaning to her now, i could be away for a year and a half and she wouldn't even realise it, but part of me says this is just an excuse.
Part of me says "get on with your life, its what she would want" but the feeling of pure selfishness on my part feels like a huge burden.
She looks so small and frail now, but she could live on for another 10 years. Her mum lived until 91.
So theres the dilemma.
Ridden with guilt, unsure how to handle it, and hesitating to go away.
I think i just need some outside viewpoints.

 

[Vonny]

Dear concernedson, and a warm welcome to Talking Point.

Whether you stay or go travelling, you will most likely feel guilt. Guilt is the monster we all have to live with, whether we are in the same house as the sufferer or thousands of miles away.

Have you consulted your brother about your plans? A lot depends on your relationship with him. My sister went away for 3 months last year and it's lucky she went then because she is needed now to help with care for mum. Having said that, I have told her to go again if she wants to. She is 56 and has always loved long haul holidays. Her 3 months in Australia and New Zealand was to see if she wanted to either emigrate or carry or travelling and it has made her realise that is what she wants.

Only you can make the decision, but in my opinion life is too short to pass opportunities by. My late husband died at 54 and my brother in law at 46 from a brain tumour which has made me realise we never know what is around the corner. Your mum could last for another 15 years, or pass away tomorrow by contracting some illness.

If you do decide to go, try to let go of the guilt. If you are going, you may as well go happy rather than bogged down by guilt.

Sorry I can't be more help but I wish you all the best in making your decision.

Vonny xx

 

[Tiz]

Dear CS,
Hi and welcome. I would like to echo Vonny's advice. I also lost my husband when he was 54 and I hope that it taught me the value of life and how fleetingly it passes. I know that your Mum would want you to make the most of your opportunities. She is as safe and secure as she can be. She has other relatives who can visit and provide change and distraction.
When you return, you can entertain her with wonderful tales and photographs.... If the worst happens in the meantime, it won't be your fault.. you can't keep your life on hold indefinitely, if you do, you will grow to resent your mother, and that would be the worst state of all.
Love,
Tiz.

 

[Trying my best]

Hi concerned son,

As Vonny says, no matter what you can do, you will feel guilty. If you go, she may well deteriorate while you are away and part of you would probably wish you hadn't gone. But even if you stay, you will probably also feel guilty - for not spending more time with her, for leaving her behind when you go home after each visit...

I think my advice to you would have to be the advice that I would give to my son if - heaven forbid - he were in your position. I would tell him to GO and to enjoy his life!!! I would NOT want my son to sacrifice his own dreams, or spend his time caring for me rather than living his own life. I would tell him to have his adventures and not look back. I would be OK.

Of course, my mum used to say exactly these things to me, before she got ill. And even though i know it is what she would have wanted I now know that it is almost impossible to 'get on with your life' without feeling almost overwhelming guilt, grief and loss.

I really do hope you go... even though it's going to be hard to make that decision.

 

[connie]

Dear concernedson, as another who was widowed young 55, I would say 'go for it'

I did not meet my dear man until after I was widowed. We have been together now for 14 years - eight of them with dementia diagnosed.

I have no wants now to go travelling (70) but I know that my man - given the power of speech and recognition would so Go - go- go.

Guilt, well I don't like that word. After all if you have done your best you should not feel guilty.

Remorse, regrets yes - but they will always be with you, whether you go or stay. We do only have one life, and it can be a short one. Your dear mum may well linger on for some years yet.

I bet she would want you to go, and live, and not let this dreaded disease take two people.

Just my own opinions, but you did ask.

 

[Canadian Joanne]

It's a personal decision. I tried to put myself in your shoes but I'm married with 4 cats. (You would be amazed how animals can influence your decision-making process.)

If I were in your position, able to travel for a year & a half, would I? I'm not certain. I think I would. Your mother has another child to visit her weekly (which I don't have - my sister lives over 300 miles away). It sounds like the chance of a lifetime and I have so wanted to travel like that.

At this point you have no other obligations than your mother and your brother is sharing that now. Talk to him about it. You could send many, many postcards to your mother, you could phone. It's not that you would be cut off for a year and a half.

Take care and let us know what you decide.

 

[gigi]

Go....and go with a good heart knowing that you've done your best for your mum...and carry her with you in your heart.

If mum was well I'm sure she'd say the same!

You have such an opportunity...don't let it pass you by because of the dreaded guilt!

My husband's daughters both now live in Australia..the youngest one emigrated only a couple of months after her father was diagnosed with Alzheimers. While he occasionally remembers that he has 2 daughters..he has more or less forgotten his grandchildren. The chances are he will never see them again...

But as they were never part of his everyday life anyway he would have forgotten them in time just the same.

To quote Shakespeare:

"There is a tide in the affairs of man, which,taken at the flood leads on to fortune..
Omitted...all the voyage of his life is spent in shallows and in misery..."

Go with a good heart...if you didn't love your mum so much you wouldn't be asking others for their advice...you'd just do it!

Love xx

 

[imp]

CS take every opportunity open to you and don't let the guilt feeling spoil it. I am sure that your Mum will be looked after and if you stay here it will change very little. I would give my children the same advice life is short and you must live it your way. From your post it is clear how much you care about your Mum and I wish you luck Iris

 

[penguin629]

Hi concernedson

We regret the things we don't do.

If your mum was well, what would she say to you now? "Why are you still here, son?"

I went travelling when I was 30 and it was the best time of my life and believe me when I say the older you get the harder it gets to go on a plane alone to a country you've never been to before.

What everyone has said on here is right. Talk to our family but don't let them persuade you not to go. You are doing the best for your mum now it's time to do what's best for you. Grab this chance and go and enjoy yourself. Your mum will be looked after.

Time is short. I realised that with the situation I have with my own dad and with the job I do. I know that life is precious and there's never enough time.

Let us know what you decide, but I think you already have.

Joanne

 

[Margaret W]

Hmmm, I'm going to go against the grain here - well, you wanted peoples' views. It's a hard one. I thought my mum would live for 20 years after she went into the home, but she only lived for one year, and I was glad I was around for that year, and with her the day she died. I am also glad that she still knew me - in another 12 months she might not have done so, and that would have been awful to me. But then, I had no other relatives to pull in, it was just me or nobody. For me, I couldn't have gone away for a fortnight, never mind 18 months.

I can't advise. It is easy to say stay home for the next 18 months and see how mum is, but you are just putting off your dream, and mum might not even notice. She might be no different in 18 months, so you could put it off again, indeed could put it off indefitely - and for no purpose. Could you ask the staff to show her how to use the computer in the office, and send her emails and photos while you are gone? It might not be her favourite method of communication, but the staff might be able to help her once a week. Or your brother can do so.

I just don't agree with everyone's glib remarks that you should go an do your own thing. Your mum is a responsibility that you have, and you must deal with it. I'm not saying don't go, but put in place everything possible to help her stay in touch with you during that period.

I ain't happy about it. Sorry.

Margaret

 

[simonmonty]

This is a really tough decision to make. I put off everything for over twelve years including my health and now I'm seriously ill. Things can change so quickly with this illness literally over night.Four people have died in the home were my mum lives and they were all fine one minute and gone the next.Just don't have any regrets about what you decide.My mum use to say go and enjoy your life but i know she is glad i stuck around to look after her and give her the emotional support and love. Just don't have any regrets about what you decide because guilt is a horrible thing to live with but so is regret. There is nothing easy about this illness.

 

[LesleyMonty]

I have also struggled with this "thing" called guilt and I do know that if my Mum was in "the real world - bless her" she would tell me to go away and not to be silly. Life is too short and I do know that my lovely Mum is being well looked after and cared for. I lost my Dad,my Husband and my Sister all within 18mths of one another and then my Mum had to go into care. I do have other family members although some of them are still in the north of england where we originate from. Mum has two sisters in Leicester both elderly and both with their own health issues which prevent one of them from visiting.
I would grab life as you find it and enjoy it and take with you your happy memories of Mum with you in your pocket !
Take care,
Lesley

 

[zoet]

If you are anything like me you would feel guilty going for two weeks let alone a year or more so you might as well go the whole hog and fulfill your dream. That definately is what she would have wanted. You can write and perhaps record a little "video" diary for her to watch. (Most digital cameras have recording function which can be put on a CD. You could mail it to your brother and he could take it to mum)and of course you can phone. You would regret it if you didnt do this while you can, and it sounds to me like you have made your mind up really, but your heart wont let you make a start. Well, you KNOW that you have to live your life for you not your mum. As a parent of three children I would seriously rather die than watch them sacrifice their lives for me. thats the whole point of being a parent, so you can watch with joy as they make thier way through life and experience everything the world has to offer. You are going to feel guilty, there is no doubt about it. Gosh, I couldnt go to Tenby a few weeks ago without being wracked with guilt. Just completely ignore it, stay in some sort of contact and have a contigency plan in case you need to come home quickly. Go for it.

 

[BeckyJan]

Hello:

As a non dementia person (I hope ) and a mother of two, I think I would miss my daughters more than my husband who loves them dearly, BUT he suffers from dementia hence severe memory loss.

Even in the state he is in, (NHome) he would be telling them to get on with their lives. I think he would forget them at least until they came back.

I hope your relationship with your brother is good. Maybe he could relay the news about you to your Mother, keeping her well informed. Maybe also you could have a 'bargain' with him that you take the brunt of 'caring' on your return to give him more freedom.
Go for it. Enjoy and then come back with strength and patience to care for your Mum - I suspect that soon she will become so immersed into the Care Home you will realise that this worrying has been totally unnecessary.

If you do go I hope you will let us all know what you are up to

Jan

 

[julieann15]

Hi
In Jan 1992 I went to Oz for a month. My dad was seriously ill with Cancer- diagnosed 1986. We took out insurance that if he looked as though he would die we could get home. Although dad did not have dementia- he certainly could not have made any judgement(brain secondaries)- I went with the blessing of my mum and my siblings with the knowledge I could get back in a crisis.
In those days there was no internet for me to stay in touch so it was letters or expensive phone calls.

If it was me now as a mother- I would say go- our lives are on hold with this disease and at the end of the day you will only be an airflight or two away?

Just my opinion

Love Julie xx

 

[Chris34]

Suggesting a compromise. If you can fund 18 months away, maybe go for 2 or 3 months less and bank the saving against the odd airfare home to visit. Only an idea - it might make the plan easier for you to go on with less of that old devil guilt, plus you won't feel so out of touch and it would keep you more in Mum's mind. Wishing you all the best.

 

[imac.girll1]

Similar situation...

Hi Concerned,

OK many different answers to your question, some you may like and some you may not!

I constantly live with guilt, and my mother lives with me. When I go to work, or have to work away for a couple of days etc etc., I feel incredibly guilty, BUT I still have to do this.

Now when I return I get the line from her, oh I have missed you so much combined with tears and hugs, (she is not in your mothers stage as yet), and I tell her I have only been away for a couple of days and the break will do us good, etc etc.

You are at an age, that you may never get this chance again, no insult about your age intended, but I know at 42, I wont do things or even consider certain things now that a few years ago I would do.

Send postcards, make a message DVD to her, that can be played IF she asks about you, she may be at the stage of out of sight out of mind, if this is the case, go and do what you need to do, you are not being selfish, and you have done a massive amount of care already for her. If you do have a good relationship with your brother and SIL, They will be happy to continue the weekly visits, and to be honest I am sure they will get the same reaction your mother gives you, the big smiles etc and gratefulness, I am sure she doesnt keep it JUST for you!

So in my view, travel, send postcards, make a message dvd that is generic, like "having alovely time here, weather is lovely, people are friendly, etc etc" dont say 'wish you were here' though! And every so often the staff could play this as she wont probably remember seeing or hearing it before. ( I am surmising that she really cant remember daily things or much that happens in past months?)

Have some guilt as this can be healthy, but dont dwell on it, as their are others who can still visit and if she was to take ill seriously I am sure you would make all efforts to return to the UK ASAP.

As you did say you asked for our thoughts and you have had a full array of them, but I hope you can take something away from it all to help make your choice.

Best wishes and dont be a stranger, should you need us. Also do let us know what you decide to do.

Take care,

iMac

 

[JPG1]

Hello concernedson

Difficult questions you are asking, and all any one of us can do is to suggest to you what we might decide to do if we were wearing your shoes.

You said is that your Mum is now “safe, secure and nourished (if not gloriously happy)”. Yep, been there, know that feeling. And I’m now talking about my Mum, who did not have dementia, and was not in a care home. She was then living with her hubby, my Dad, but as happy as she could be, under the circumstances of her caring-responsibilities as they were then, caring for her first-born son, my brother, who was also living with them. Many years ago now.

And I wanted to go travelling ... and I did. Knowing that my Mum had a few ‘health problems’ of her own, and knowing also that she might not be there when I got back home again. Knowing that I might get that dreaded phone call to say “come home now because ......” and wondering whether I might feel some kind of regret about my decision to do my own bit of ‘seeing the world’.

So my first couple of weeks, and perhaps months were fairly tricky, for me. But then, before I knew it, the first year had passed without concerns, and then after 18 months, I came home again. Much to my Mum’s delight, I was still in one piece.... and so was she.

She lived another 4 years after I came home from my wanderings, even though her health problems had meanwhile increased, but she still managed to handle it all. As did my Dad.

So, if I had to make that decision again today? Yes, if I had not done that travelling then, I would not have seen the places that I saw, the experiences that I experienced, the people I met .... and some of those people are still in my life today, many years later.

Feelings of regret? No. Not one regret.

Feelings of guilt? No. Not one. Guilt is a word that should be abolished from the vocabulary of caring. All you can do is your best. And your best on any day may be different from your best on any other day.

Go for it! Life is too short and too unpredictable for you to sacrifice your own dreams to dementia.

Take a laptop and a digital camera; send emails and pics back home to your Mum via your brother, or via care home. Keep in touch with your Mum. Ask the care home whether Skype is available, then you can chat from ... anywhere if you have the software and the connection.

Go, concernedson, go.

.

 

[sad nell]

You show such love and compassion for your mum, that i know you must have has a good relationship prior Ad, all, i can add is what i would want for my children to do if it was me, and it would be to grab life and have fun, and experence other cultures. that is what i would wish for my children, and i expect your mum would too for you, am sure she knows you love her, because as an outsider it is plain to see. but you must feel right with your descion eles you would be tormented , have a good life love Pam

 

[NewKid]

I'm somewhat surprising myself, as I am a great one for travelling and lived in Asia for over 10 years ... but I'm tending to think 18 months is a long time when an old/ ill person is involved. Could you consider shortening your trip a little - or breaking it with a quick hop (s) back at some strategic point? You obviously love your Mum so even in her deterioating health you will probably miss her and perhaps want to anyway? And definately having the provisions in place to come back at short notice if required....and brightening your Mum's life with letters and postcards, emails DVDs and so on of what you're doing is a good idea.

I do however agree with those who stress that life cannot and should not be put on hold - who knows what is round the corner for you yourself, you can't have regrets about not living your time to the full. Hopefully your brother will be generous and recognise your right to fulfil this dream. His support is crucial I would think.

Where are you thinking of going, anyay?!