mother just diagnosed with mixed dementia

[fizzbomb]

I'm new to this site, and new to the realisation that what I thought was my mother becoming a bit forgetful, is in fact Alzheimer's and vascular dementia. I don't live near my mam, I live at the other side of the country. I don't drive, and for various reasons, I haven't been able to see her in a year! Although I do have a family who live near her and are doing all they can to help.
I suppose I was shutting my eyes, as not seeing her, only talking to her on the phone, I have had many normal phone conversations, and have been able to think it wasn't that bad. But now, after her diagnosis, discussions with my family, finding about what is really going on, and the very obvious confusion on the phone,that is all the time now I have had my eyes totally opened. I now know the extent of the 'incidents', the confusion, going out very early in the morning for appointments, not knowing if it is night or day. Not being able to use the telephone or tv remote properly, confusing them so having a conversation becomes worrying, as I never know if she is going to put the phone down and walk away leaving me shouting down the phone for her to come back. Thinking my brother is in the house with her, when in fact is at the other end of the telephone instead.The list goes on, and is getting worse, it feels like, on a daily basis.
I'm collecting her to bring her to mine in a couple of weeks, for a holiday. She is desperately looking forward to it, and I know my family will benefit from a bit of respite. However I am .... scared!! It will be 4 hours of train travel, and I dont' know how she will cope with it. And when she gets here I want to make my home safe for her( she hasn't seen my home yet so it will be totally new to her). I don't know how to handle things if she gets upset or frightened, which she is doing a lot at the moment. I'm scared she will try wandering at night, so will have to keep hold of my keys at night. And if she gets here and wants to go straight home, I am unsure if I should take her back, or hope she soon forgets and settles. It will only be a week's holiday, but it breaks my heart to know that I am scared and don't know how to handle things. It will be the first time I have seen her since she has started to get much worse. Just a year ago, the most we seemed to have was a bit of confusion and memory loss, now it seems she is losing herself to this dreadful disease
I am sorry for rambling, I just needed to talk and get it off my chest!

 

[Noorza]

Hi Fizz if it helps we are all scared and none of us know how to cope, most of us seem to cope as we go along. It's great that you are giving your siblings a break and having some special time with mum.

You are right to consider hiding keys so she can't wander but I would also talk to the rest of the family about how they think she may react and what her needs may be. They are so varied. I hope you enjoy your time with Mum.

 

[fizzbomb]

thank you so much. It feels so good to be able to come on here and talk, to people who know what is happening, and going through the same thing. Its been made so much more hard for me not being able to just jump in a car and help out, or visit her, but I am going to give her a lovely holiday ,and hope that I can make it special for her, in small ways.
I am now in contact with my family more than ever, and chat with my brother who lives near her, regularly. Even if there is not much practical help I can give, I am trying to give support, and a listening ear, and love.
I will speak to him about what her needs are, thanks, as he knows so much more than I do at this stage.

 

[Noorza]

I can tell you first hand that to have distant but supportive family can make such a huge difference, Just to be able to talk, to share, to understand and appreciate the difficulties they have means a lot to those who are the on hands carers so don't underestimate your value.

I am the hands on carer but appreciate those family members who support from a distance, they make all the difference.

You might want to view your home as if you were a toddler, mad as that sounds, but where are the dangers, do you have a cutlery draw? Can this have a child lock on it, they only cost pennies, does the kettle need to be out of reach? I don't know how poorly your mum is but these might be things to consider.

Mum went through a stage of putting inappropriate things into the microwave and setting fires, is this likely to be a problem?

It's difficult to foresee all of the issues as they never seem to fail to surprise us but just trying to think of some of the possibilities.

 

[marionq]

I hope all goes well. I would suggest that you do not try to do too much as I find that over stimulation either exhausts or confuses my husband. This is especially where a lot of travel or a lot of different people are involved.

Of course socialisation is important but take it calmly and in small manageable bursts. This is easier for you too as full on can be wearing for the carer.

Best wishes for a good visit.

 

[Chemmy]

Welcome to TP from me too.

Just a thought, might it be easier for you to stay at your mum's? She will have her familiar surroundings but in effect, a live -in companion for a week. It'd also give you first hand experience of what she's like on a day to day basis. You can still take her out on jollies and meals if she's up to it, but the stresses of travel would be much reduced and she's be in her own bed at night. Much easier to play it by ear that way.

The idea of a 'break away somewhere different' might sound ideal to most people, but in fact, can be really very unsettling for the person with dementia.

 

[fizzbomb]

thankyou for your advice and comments,marionq and Noorza. That s the one thing I know I can do, be there for my eldest brother, who is taking on the responsibility.It has taken such an awful thing to make us keep in touch, but it does help me as well to be able to talk to him, and I think it is helping him too.
My mam is crying a lot at the moment,(though never on the phone with me, she tends tosound bright, I think this is where my confusion came from). My brother is with her now, hes just texted to say she isn't at all well today and is very upset and crying.
She is still capable of walking and doing things pretty much, apparently she has some days she is lucid, but has 'episodes' of confusion often through most days.I think she has stopped cooking( my brother says thank god) and she buys chips, goes to cafes and the like. As far as I know she still uses the microwave, though the advice on that is great thanks, and I will pass that on to him too. She also has started walking with her head down really low(she has done this for a few years, but its much worse lately). so much so she told my bro that she had bumped into things twice today.
I'm getting nightlights and the such for my stairway, and will leave lamps on downstairs in case she gets up in the night and doesn't know where she is. I originally had lots of plans for when she comes, but have already amended these to small walks etc. She loves walks and parks and the countryside so I'm going to take her to a couple of parks etc. We used to go bird watching, so I hope that hearing the birdsong will be nice for her. Now I just have to order some nice weather
Apparently she is only sleeping about 2 hours a night and keeps falling asleep in the day. This is the bit that scares me most, the night times but I will sleep with my door open,so I can hear if she is up and about, and she is having the big room with the comfy bed
thank you again for your comments and advice

 

[fizzbomb]

Yeah,Chemmy I though that as well.I had thought about her not coming up here to stay with me,and me staying at hers instead, and mentioned it to my brother. He said, oh please don't say she cant go to yours, it is all she talks about,( it was planned months ago) and she is pretty much living for it. He said she would be devastated if she couldn't.
I'm spending a few days with her at her home first, and she won't be travelling alone at all. Though I do know, the way things are at the moment, things could change even in the next couple of weeks, before she comes here, as things have already got worse over the last few weeks or so.
I'm keeping an open mind, and will see how it goes when I go to hers I think. I can only play it by ear I reckon at this stage.
Thanks

 

[Noorza]

It is really common for a person with dementia to show one side to those who are the hands on carers and another to the rest of the world. This can often lead to conflict in the family as one person sees a different person to the one being described by the hands on carer.

In my opinion, for what it's worth is to believe your brother's version. This is really very common where a dementia sufferer can manage a façade to people they are not with all of the time especially in the earlier stages.

 

[fizzbomb]

I think this is why it has been such a shock to me. Finding out the things she has done, I am no longer in any denial about it(phoning my brother at his home in the early hours, asking him to come out of her kitchen so she can see him, when she is on the phone to him. She even sent me a birthday card and present the other day, it was my birthday 3 months ago. It is all these things that break my heart, but at least I now know the truth and am no longer fighting it!
Not seeing her, I was able to fool myself for a long time really, that things weren't that bad. Especially as on the phone even now, she tells me things are ok. She does know she has dementia, and she says her memory is bad, but other than that doesn't want to talk about it to me, which I respect, and don't push the issue with her.. She never tells me about any of the episodes she has, though I don't know if people with alzheimer's remember episodes of confusion afterwards.
God, this is hard isn't it!

 

[fizzbomb]

As an add on to my last post, I hope that she doesn't remember her confusion afterwards. I really do hope that. I don't know how to even consider that she might remember the things she is doing!

 

[Noorza]

I am so pleased that you are now in a place where you accept how poorly your mum is and that you can work with your brother to support your mum. You will both benefit from the strength of each other to manage the difficulties that will be ahead.

Sadly not all of my family have managed this and it has divided us, I am so pleased you are working together as it will only help your mum.

 

[Noorza]

Just a thought, but does your brother drive, and have a car. It might be better if he can drive both you and your Mum home to your house, rather that subject her to the confusion of stations etc. If you were going to pay for train tickets, then you can pay for his petrol instead - it would probably work out cheaper in the long run. Of course he'd probably have to come and collect her afterwards as well, but in that way, at least you won't have to pay another double train fare, as you would have to travel back with her on the train as well.

That would be a good idea if it can happen, speaking as a person without dementia, I find some recent trips to London can be disorientating, the noise the buzzle, the unwritten rules of going by tube. For someone with dementia I can only imagine it would be confusing.

Maybe a coach trip? Make it as easy as possible.

 

[jaymor]

Hi and welcome from me.

I think I have to agree that staying with your Mum will be easier for both you and your Mum. Is your brother worrying that he will not get the break he was looking forward to if your Mum stays at home?

Many things in your Mum's own home will be confusing to her so she might be a lot more confused in a building she has never seen before. You can take her out whilst staying in her own home and find somewhere that was familiar in her past that she would enjoy seeing. You could take her to see friends and relatives as well as a walk around shops she is hopefully still familiar with. Assure your brother that you will not call upon him for help unless it is really necessary.

A four hour journey by train is a long time for someone to have to sit still and so much worse for someone who is confused. You can't just get off at the next stop and walk if there is an upset.

It won't be an easy week for you but probably easier for your Mum.

Good luck and keep posting and letting us know how you manage,

Take care,

Jay

 

[marionq]

Whatever way you get to your house your Mum will have forgotten about it by the next day. We flew to Heathrow and back five days later and for days afterwards my husband swung between "how did we get here" and "did we come back on the train". He is mild with periods of moderate Alz. As long as you are with her keeping things calm and talking to her she will probably cope and so will you

 

[Onlyme]

I would make a list of things you are going to need.


Pressure mat so you know when she is out of bed.

Alarm for the main door.

 

[SoyHJ]

As an add on to my last post, I hope that she doesn't remember her confusion afterwards. I really do hope that. I don't know how to even consider that she might remember the things she is doing!

My husband is in very early stage AD and has memory lapses and mild confusion from time to time. All I can say from my own experience is that when he has a memory lapse, he isn't aware of it afterwards and I never tell him he's forgotten, just repeat whatever it is as if it were the first time.

As for confusion, a bit more difficult but, again, he doesn't realise he is getting confused over something or having trouble grasping something so I simply try to explain to him, as clearly and simply as I can, whatever it is he hasn't understood. He is at an earlier stage than your mother and would be aware of me making my explanation 'too childlike' so I have to choose my words carefully!

 

[BR_ANA]

On your home, first thing show her where she will sleep and where is bathroom.

On train, i would travel with more people. I mean someone to calm an watch her and someone to carry lugage, worry about conections/money/ticket ...

For activities, think of what a todler (who is too an old lady) could do.


Seems they got tired and more confused, so a after lunch nap is a good idea.