Looking for some advice

[gary caister]

My Father who after 3-4 years of confusion has been diagnosed with Alzheimers. I live nearly 300 miles away and my sister and her family live only 5 mins away. She has been the one who has had to deal with this a lot more than me due to her location. I try to get to him when I can but sometimes it can be difficult and as such my sister and I have fell out more than once. My father is still living in his own home and has social services carers visiting him 3 times per day. He is however currently being assessed to see if he can continue to live at home safely.
In the past we have always had him come to us for either Xmas or New Year for a few days. The last time he visited he became very confused and disorientated.
With the holiday season looming and I am unsure what to do. My sister desperatly wants us to have him but my wife thinks it would do him more harm than good. I am stuck in the middle, I want him here but that maybe just to appease my own guilt at not seeing him enough. Would the chane do him good or would it upset him unessessarily. Does anyone have any advise or experience they could share. Thanks.

 

[noelphobic]

My Father who after 3-4 years of confusion has been diagnosed with Alzheimers. I live nearly 300 miles away and my sister and her family live only 5 mins away. She has been the one who has had to deal with this a lot more than me due to her location. I try to get to him when I can but sometimes it can be difficult and as such my sister and I have fell out more than once. My father is still living in his own home and has social services carers visiting him 3 times per day. He is however currently being assessed to see if he can continue to live at home safely.
In the past we have always had him come to us for either Xmas or New Year for a few days. The last time he visited he became very confused and disorientated.
With the holiday season looming and I am unsure what to do. My sister desperatly wants us to have him but my wife thinks it would do him more harm than good. I am stuck in the middle, I want him here but that maybe just to appease my own guilt at not seeing him enough. Would the chane do him good or would it upset him unessessarily. Does anyone have any advise or experience they could share. Thanks.

Hi Gary and welcome to the list. I have to say that I really don't envy you this predicament and I can see both sides of the story here. People with dementia tend not to cope well with change so it could well exacerbate his confusion if he came and stayed with you. However, I can see that your sister probably desperately needs the break. How would he get to your home? I assume someone would have to collect him or is he still capable of travelling independently? Would it be out of the question for you and your family to go and stay with him, kind of the mountain going to Mohammed?

I've probably given you more questions than answers there, sorry!

 

[Margarita]

You know what I find it is the fear of the unknown with AZ, because we know it is going to unsettle him just for a while then he settle down with staying at your home , but how your going to react to It IE meaning how are you and your wife going to cope.

If you don’t try your never know. How about taking your dad to your place for a weekend before Christmas to see what it would be like, my mother has had a lot of change in her surrounding past 4 year I know what to expect so I understand.

Don’t do anything out of guilt or your just be frustrated and your dad just going to feel your vibes and pick up on it and that will upset him ,confuse him more and cause tension for him at your home.

 

[Margarita]

Ps

PS


Hope you do not mind me adding, but if your sister really needs a break could you not ask inquirer about respite for her ?

Or is your sister issuer really about sharing the care between the both of you? Does your sister have your father to stay at her home at weekends? Or is she running around home life and checking up on your father. Have you ever brought up respite with your sister or would your father not go

 

[Lila13]

Is he well enough to express his own opinion?

Lila

 

[gary caister]

Thank you all for your comments and advice. My dad would fight kicking and screaming at the thought of respite. He has the occassional day at a day centre but he doesn't mix well as he doesn't believe a) that he is old and b) that he has a problem. Part of the trouble is he is still very physically fit and wouldn't understand our concern or the reasons for a respite. But he is being re-assessed next week and we'll have to see what the specialist recomends.

He is still in his own house and my sister along with social services attend his place probably 5 or 6 times a day.

And yes I think my sister issue is about sharing the load but with the distances involved it is very difficult, but I also know she is at the end of her tether and the stress is affecting her family life. He doesn't actually stay with her as he is literally half a mile away. He moved there a couple of years ago, this was arranged by sister with little discussion with me as she wanted him near her but I dont think she realised for one moment what was coming with the AZ.

I am racked with guilt and I'm not sure how to deal with it. My sister knows this and my wife believes she's playing on this and I am left as piggy in the middle. When I visited him a couple of weeks ago for a day I left completely devasted and distrought.

We could go and stay with him at New Year but there is no space in his house and it would mean staying in a hotel. Whilst I could then make sure he was ok for a few days I wouldn't be there 24 hrs a day and he would still wander round to her house at all times even in the early hours and it is these sort of actions that she needs a break from. So in her mind the only way she can get a break is for him to go somewhere away.

I can arrange to collect him and would have him for a few days but I am still not sure how he would cope with the change and unfortunatly there is no possibility of a trial run.

Thaks for your thoughts, everyting is appreciated
Gary

 

[perfectpatience]

Re, Your dad

Hi Gary. My heart really goes out to you. You live so far away too. I also feel for your sister as Ive got brothers and know I would have loved for them to help me more with my mum when she was at home. They didnt help at all really...and if they lived as far away as you...I would have understood it more. Your sister is obviously in need of a well earned break whichever way you look at it. She has the constant worry 24 hours a day with your dad....and I wonder if somehow you could try and help her out. Speaking from her point of view she might like you to ask her what she wants you to do...and then you can compromise. I know how easy it is for arguments to start with all this 'worry'....but you seem like such a reasonable approachable guy...Iam sure you wont be like my brothers ..and will all come to an agreeable decision for all concerned. Good luck Gary. Keep us posted. Love PP x x

 

[gary caister]

Thanks PP. I know they say its good to talk and this applies to my sister and I, however I'm terrified of saying or hearing too much because I think there are so many bottled up emotions that if they all came out it may bind us together or just as easily create an insurmountable rift !!

I lost my mum 17 years ago to meningitis, she was only 53. I found her alone in her house when I returned home one weekend. She'd died through the night without any warning at all. I had moved away and she was living alone. Its a memory that'll never leave me.

I'm a 47 yr old businessman and run 11 companies with 200 people employed by me and to everyone else I probably appear to be in control and professional. Inside and in private I look in the mirror and see a little boy that just wants his mam and dad.

 

[Áine]

I am racked with guilt and I'm not sure how to deal with it. My sister knows this and my wife believes she's playing on this and I am left as piggy in the middle.

Hi Gary ....... what a difficult situation! Guilt seems pretty much par for the course around dementia and caring for parents. Of course you know your sister best ...... but it could just be that she's full of guilt about the whole thing and tired and not coping too well, and making your feelings of guilt worse without necessarily intending to. If at all possible, it would be good to talk with your sister, let her be angry about the fact that there's 299 miles difference in your distances from dad (even though that's no one's fault) if she needs to be. Ask her what she thinks would make it easier - if you can manoevre things around so that you feel you're working together in your dad's best interests rather than feeling guilty/resentful about how the load is shared .................... easier said than done I'm sure .... it'll make things better all round for the future.

best wishes
Áine

 

[Áine]

Gary
just wanted to say that I wrote my previous post before I saw your reply to PP.

 

[Skye]

Gary, your last post really touched my heart. What an awful experience to have found your Mum like that.

You are about the same age as my son, and you have given me some insight into how he must be feeling. I lost my first husband and my daughter suddenly, in quick succession, and I was so flattened I don't think I ever gve him the support he needed.

I understand your reluctance to get into a debate with your sister. You are both upset and wound up, and you might make matters ven worse.

My suggestion is that you should make time during the week to go and see your sister, and arrange an appointment with Social Services while you are there. That way, you would be working together to try to arrange some respite for your sister. I'm sure she needs it, and I'm sure you both want the best for your Dad. If she feels you are on her side, I.m sure she'll co-operate with you, instead of feeling resentful.

I don't know if that's possible for you, but it's the best I can come up with.

Good luck.

 

[gary caister]

Kind words Skye, thanks. As men we are supposed to bottle up these emotions and be a rock for everyone else. But by God it hurts inside. Talk to your son about it. Nothing makes the pain go away but someone or something has to help you release the safety valve once in a while.
LOL

 

[Amy]

Hiya Gary,
My brother only lives a 100 miles away; he makes regular visits up here (about every three weeks). Knowing that he would be here regularly (not ad hoc), and knowing that he would be around when big deciisions needed making, has helped. I think, for me, the regular planned nature of his visits has shown his commitment to supporting our parents.

And yes I think my sister issue is about sharing the load but with the distances involved it is very difficult, but I also know she is at the end of her tether and the stress is affecting her family life. He doesn't actually stay with her as he is literally half a mile away. He moved there a couple of years ago, this was arranged by sister with little discussion with me as she wanted him near her but I dont think she realised for one moment what was coming with the AZ.

I am racked with guilt and I'm not sure how to deal with it. My sister knows this and my wife believes she's playing on this and I am left as piggy in the middle. When I visited him a couple of weeks ago for a day I left completely devasted and distrought

Touch of bitterness in the underlined comment? Let it go. Of course she wanted him close by, so she could pop in. My dad is about 20-25 mins away - even just 'popping in' takes an hour. Put the guilt to one side and come up wih a plan. Sounds to me as though more day care needs to be arranged for dad, and maybe the issue of respite needs to be addressed - even if it is only for a weekend, and maybe your sister needs you to help push those things along - a united front. There are things that you can do - put your business head on and think about it logically.
Love Helen

 

[noelphobic]

Gary I wish my brother was more like you! He only lives about10 miles away from my mum's nursing home. He doesn't drive but the home is on a good bus and train route, as was the home she lived in previously. He hasn't seen her since last December when she was in hospital (which, ironically, would have been harder for him to get to!) Prior to that he hadn't seen her since my dad's funeral nearly a year previously.

He phones my sister occasionally to enquire after my mother's finances (not her health!)

I hope you can work something out with your sister. You both obviously want the best for your dad and that is what is important.

 

[Margarita]

I can really relate to you when you say

Inside and in private I look in the mirror and see a little boy that just wants his mam and dad.

I feel that in the silent of the night, was thinking in this world its just pain, suffering, and what that leads to it just make you stronger to feel those bottle up emotion, that has happen to me, but then we are all different with putting closer to the past, because those emotion are from the past effecting your hear and now, its learning to recognise it, I had better stop as I do not want to offend anyone, that's just how I think help me move on help me cope. Just wanted to share



I was thinking as I do.



When you said that

your father he is being reassessed next week and we'll have to see what the specialist recommends

.



I am wondering is your father on any medication for AZ?



Now with my mother who uses to wonder the streets at night, when my mother was put on medication for AZ the wondering stop.



I two like your sister, did not know what I was letting myself in for, I did not foresee that my mother was going to get AZ, I bet your sister regretting it now and she also feeling guilty in feeling that, so she may be putting her guilt on to you, she not doing this intentional we always have to blame someone and its always the one we love most, god did I feel resentment towards my brother I felt he always took the easy way out and would say well put her in to a care home, yeah ok but my mum would not go. so I had to face the fact that I had to give up part of my life. face this on my own and my brother can just put up with my outburst of emotion, I thought his not getting away with this Scott free, 4 years on I have face my fears emotion, resentment toward him has past we are still close and his my shoulder to cry, and sometime his not even good for that , so I lean on myself . I have no partner to lean on, Hopefully your sister has an understanding husband, if not its you that going to have to be understanding to your sister, and you have your wife to lean on, gosh reminds me of the song “lean on me “don't we all just need someone to lean on, on time of crises

 

[Lynne]

Inside and in private I look in the mirror and see a little boy ...

Hello Gary, from all the other little boys/girls who contribute to talking point. I'm sure I'm not the only one who read that line with a lump in the throat and a prickle of tears behind the eyes. AD makes us feel so powerless, even when we are doing all we can, even when we are on the spot as your sister is. Hence frustration is added to the pain, exhaustion & distress.

Forgive me for speaking bluntly and playing 'devil's advocate', but if you are a successful businessman, can you not delegate your responsibilities so that you can take a few days off, and go to stay with your Dad?
I know you said "there is no space in his house", but is there not even room for 1 person?
OR, if your sister could get away for a few days, could you not stay at her house at night, and thus spend time with your Dad?
You might have to 'rough it' and look after yourself, rather than stay at a hotel which would (I think) remove you somewhat from the realities of his everyday needs, and your sister's need for relief.
I'm sure this suggestion would not be met with much joy from your wife, since naturally she feels protective of you, knowing how badly you feel about the situation already. I sympathise with her feelings too, but it's not her Dad who is ill, and your sister sounds as if she's getting to the end of her tether.

If you (& your sister) are able to meet with Social Services as Skye suggested, perhaps it would be possible to increase the number of care visits to Dad, if only for a week or so to take the weight off your sister. He is already used to them coming to his house, so perhaps that would be easier for him to accept than him 'going into respite care', if that level of care would be sufficient. And if it works ... maybe it could be continued.

I suppose that depends in part on Dad's re-assessment next week, and whether your sister is able to make clear to the specialist that matters are getting beyond her. That's a difficult thing to say, but she'll have to say it loud & clear if the specialist is not to think everything's fiine & dandy, and under control. I hope you will be speaking to her before that appointment, to make sure she knows that she has your support whatever she has to do. She may feel that you would blame her if she can't cope, please make it clear that that would not be the case. It's easy to assume that 'it goes without saying', we Brits are notorious for NOT saying important things. Don't forget that she probably has a mirror as well ...

I hope you don't feel my response has been unsympathetic. There may be very good reasons why you really cannot do the things I suggested above. On the other hand they may be merely difficult, not impossible.

Best wishes

 

[Skye]

Kind words Skye, thanks. As men we are supposed to bottle up these emotions and be a rock for everyone else. But by God it hurts inside. Talk to your son about it. Nothing makes the pain go away but someone or something has to help you release the safety valve once in a while.
LOL

Gary, thanks for that. By coincidence I had a birthday card from my son this morning enclosing a lovely letter. He had listened to my radio programme (see The Journey thread), and for the first time had understood what I was going through. Perhaps this is the opportunity to talk -- he has been totally unsupportive up to now. I guess he thought 'not my dad, not my problem'.

I will try to mend some bridges, and I hope you'll do the same. We all need love and support.

Love,

 

[gary caister]

Thanks Lynne & Hazel. Sometimes it takes the words of a stranger to help you see what is right in front of your face and obvious to everyone else. I have made a commitment to visit dad more often and talk to my sister a lot more. I know I should have done it months ago. I'll always continue to feel I am under achieving because no one can win in these circumstances and I am not used to this in my private and business life. But its comforting to know other people have had the same problems and feelings and that at least makes me feel that its not that I don't care about my dad and his AZ but I've probably been building my own obstacles as an excuse to hide from the realities.

This all started from a request to pole other peoples views as to whether a visit to us at New year would upset my father by taking him out if his routine and whether it was, as my wife puts just a gesture to appease my concience. It has become a whole lot more, as is the way with threads. And for all of your words and suggestions I sincerely thank you.
LOL to everyone
Gary
Caister on Sea

 

[Linda Mc]

Well, everyone seems to have given you good advice if not the solution you are hoping for.

Two thoughts occured to me , a- is it possible for you to attend the assessment?
b- any chance of you swapping homes with your sister for a short while to give her a break and you the opportunity of being nearby?

It is hard trying to please everyone and you are trying so hard to do your best and that is all you can do your best!

Take care

Linda x