Newbie!

[Librarymaid]

Hi,

This is my first time here so I'll apologise in advance if I offend through ignorance!

Earlier this year my brother, (I'll just refer to him as 'D') aged 63, was diagnosed with early-onset Alzheimer's. After the initial shock we are trying to come to terms with this and have felt quite isolated.

As a family, we want to support him and especially his wife and two sons but often it's hard to know how best to help without feeling we're interfering. In the last few months there has been a decline in D's memory retention and we realised txts to my sister-in-law were not getting though to her as D had deleted them from her phone!

My sister and I, and our daughters, are planning a 'girls night' to take sis-in-law out for a meal - ostensibly to give her a break, but also to try to discuss strategies for communication. Also, to try and establish physical ways in which we can help.

She says there's not much we can do but we don't just want to sit on the sidelines, so I guess what I'm really asking with this post is aimed at anyone here who's in her situation (or been through it) - what would (or would have) helped YOU in those early days after diagnosis?

We know we're in it for the long haul and are aware that the future will require us to work together as a team to support both D, his wife and his sons, but any tips or advice would be gratefully received - we know there will be issues we haven't even considered yet!

Many thanks, in advance, for any ideas you may have!


Librarymaid

 

[Grannie G]

Hello Librarymaid

Welcome to Talking Point. How could you offend?

Your sister in law is probably still trying to come to terms with your brother`s diagnosis, if she ever does and I`m not surprised she isn`t sure how you can help.

One of the biggest problems for many full time carers is the feeling of isolation. You will certainly be able to help her with this and are already doing so by planning a girls night out for a meal.

I would suggest you contact her directly and not rely on your brother to pass messages on. It does not mean bypass your brother, stay in contact with him too but not for messages.

Another way you can help, you also have in mind. It is being there for the long haul. So many family and friends slowly but surely fade away into the distance, not knowing or even wanting to know how to remain connected with the person with dementia.
If you are in regular contact, you will instinctively know how to help, it will not be necessary for your sister in law to ask.

Perhaps your sister in law may be able to get the support and friendship Talking Point has to offer. It is a lifeline for many of us.

You certainly have the right attitude. It was lovely to read your post.

 

[lin1]

Hello Librarymaid
Welcome from me
I am sorry to hear about your Brother

Their is no way your post could offend us , quite the opposite in fact!for you want to help your brother his wife and family

I am speaking from my own experience of looking after mum full time
things that helped me

One of the things I found i needed was a friendly ear, someone I could unburden myself to, someone who would listen but not necessarily give advise to me unless I asked for it

another was regular breaks knowing mum was being looked after so I wasnt fretting and not having to rush back
All carers need breaks even though we often say we r ok

As for the actual helping of your brother , the one who knows best how you can help, is his wife, so do keep on asking no matter how much she says their is not much you can do

Do suggest your Sister in Law (SIL)joins TP

 

[malc]

the best advice i can give is not to be a fair weather friend and disapear when the going gets tough,the most common thing i seem to hear either off my family and friends is it's too heartbreaking to see etc etc,i've learnt who my true friends are since my wife was diagnosed 2 years ago at age 40,i hear this off other people who i know who are in the same situation has me.

 

[Librarymaid]

Thankyou all for your welcome!

As I said, we are only at the start of this long and weary road - I take on board the comments about 'fair weather' friends and realise nothing will be 'normal' for any of us for the foreseeable future!

I will pass on details of this site to SIL, she may find it useful.

Thank you so much for your good wishes,

All the best,

Librarymaid

 

[chris53]

Hello Librarymaid, a belated welcome from me also, as you will see,already tons of support, understanding and friendship here,so please keep posting to let us know how you and the family are and when you need to talk, come here day or night someone is around

Best wishes
Chris

 

[FifiMo]

Hiya Librarymaid,

I think it is fantastic that, as a family, you are all geared up to support your brother and his family through this journey with dementia. From my experience, and I wonder if you are the same type of family, my family jumps in there, all guns blazing, more than willing to do whatever is necessary, are sincere in our offers to help, to take some of the strain that kind of thing. What we found however is that that is not what is needed. What is needed is slow and steady and consistency in the support. If nothing else we realised that my mother's dementia was going to dictate what needed doing, not any of us. In a way you don't want to alarm your brother by all of a sudden all the family swooping all over the place because nothing is likely to frighen him more about what is happening to him. On a day to day basis your brother probably doesn't notice the changes that others might notice, he needs people to treat him the same as they have always done. Spending time with him and the family can be more of a help than anything else. You don't go into details about what type of challenges your brother is having to deal with right now, but please be careful of things that could cause paranoia to develop. Some people with dementia are ultra sensitive to things going on around them but the confusion that the dementia brings often causes them to come up with the wrong answers and that is how the paranoia starts. Yes your sister in law will need your support and I bet she is already grateful for you being there. Yet again one of the best gifts that you can give is time and someone to listen. Whilst she is the one who will be caring on a day to day basis, it can become a very isolating time as the dementia starts to change the nature of the relationship that she has with her husband. So, if I could sum it up from my experience, what the family needs is someone to walk alongside them on this new journey they are on. What ever direction that journey takes and whatever their individual needs are, be there to support them. Let yourselves be led by what is needed by them.

Once again, you will see many people on here who have found that family and friends have all drifted away and so it is lovely to see you and your family being there and ready to help in any way.

As always, this is based on my experiences but I hope it helps in some way,

Fiona

 

[rjm]

Hi Librarymaid,

Sorry to hear about your brother's diagnosis, it is indeed a shocking time and it takes the whole family awhile to adjust.

It is great that you want and are willing to help support him and his family. Others have already mentioned the need for long term support, not just fair-weather friends - that is very important.

Other things that are helpful are:

Beware that communication can be difficult. In my case I could not discuss anything relating to her in Sharon's presence, either on the phone or in person. This meant all my communication had to be by e-mail. And yet some people would phone and ask question after question but even if I told them I couldn't talk about it Sharon would fly into a rage wanting to know why I was talking about her. Fortunately this phase, as they all do, passed.

Do not always ask, expectantly, "How is he?" It is a progressive disease, if not day by day, certainly month by month he will be worse.

Don't relay every bit of news you hear about some lab mouse that seems to
have a memory improvement after ............ (fill in the blank). Yes, research is important and advances are being made but these take time and most hopeful findings are dead-ends. Your brother and his family will be busy dealing with the daily grind, wishful thinking is often just discouraging.

Do take your cues from him and his wife. If they say there is nothing you can do, accept it, but let them know that you'll check back in a day or two.

Make active help suggestions rather than making open ended offers. "I'm going to the store, can I pick up anything while I'm there?" is much more helpful than "Do you want me to go shopping for you?"

Be patient, unbelievably patient - you are at the beginning of a very long, slow, arduous journey.

Encourage your brother and his wife to get their legal and financial affairs (will, power of attorney, living will, etc.) in order. It is so easy to do now a yet will become so much more difficult once your brother is no longer capable to make those decisions.

Read the thread on Compassionate Communication and try to implement as much of it as you can.

Be aware of what the future may hold but try not to dwell on it. Enjoy your time with him now, and treasure it.

Wow, that is a longer answer than I had planned, didn't mean to go on so much!

 

[Dazmum]

Hi Librarymaid and welcome. One thing that I think your SIL will welcome will be the knowledge that she can have some breaks and be able to leave your brother with people he already knows well and trusts. Very often we read here about partners who are just worn out with caring 24/7 and either are reluctant to have a break as their partner doesn't like to be left, or can't afford to get carers in or just feel they have to be there the whole time. It seems clear that everyone needs a breathing space from time to time, even just to go for a walk or to have some valuable 'me' time, even if it's just for an hour or for longer. This may be more applicable later. Good luck, and keep posting. It would be great if your SIL joined too as although it might be scary to read others posts and experiences at first, there is so much help and understanding here. x