Dealing with dementia

[imekon]

My mother is now in a nursing home with dementia.

Going to see her, I'm finding it very hard to deal with. I don't know how my father has the patience to talk to her - she is so variable. Mostly she's aggressive, demanding to know when she's going home.

So I sit there listening to this conversation and I can feel the shakes coming on. The level of anxiety I'm feeling is going through the roof. I make an excuse to get out, go out to sit in my car in the car park and try to calm down.

Last visit she forgot who I am. I was suddenly a stranger, not her son. Other times she's looked at me and asked what have I done to my hair (I'm going gray).

All the things she's doing I understand is precisely what can expected from someone with dementia. It's easier to read about it than to actually see it in person.

This stuff has been going on for about two years now. She was only diagnosed last November. It was the hardest thing I've ever done when my brother and I had to walk away from her to force the authorities to do something.

Since then things have gotten better, and she is in a place that can look after her. It's just trying to deal with visiting her, the intense feelings of dread I get are hard.

 

[janma221]

Hi, I think that feeling of dread is normal. My mother not in CH and still at home a couple of hours drive away but when I tell her I am visiting I am in a state of nervous tension for days before I go. It's not knowing what to expect and how difficult it is to reason with someone with dementia. Keep posting on here as a lot of people will understand how you feel it's a horrible illness.
Jan x

 

[fullmoon]

Having recently viewed a few nursing homes I can appreciate your feelings. Does not matter how good the home is, it is hard to accept a loved one there 'waiting for god' and that is what it boils down to for me. Also, I believe being surrounded by other patients with dementia amplifies the emotions felt.

Unfortunately, the roller coaster of emotions do not stop when they are place but please take comfort from knowing she is well cared for.

 

[stanleypj]

This must be so hard Pete.

If/when the aggression reaches a point where you have to leave, you could try telling her why, instead of making an excuse. People will say she won't remember and that's probably true. But it's worth a try . There's nothing to lose, for either of you.

Under most circumstances, the general advice to try and ignore aggression is sound but if it is affecting you in the way you describe you can try to do something about it. If you have a response ready, a script, you can use it every time and just see if it has any effect - just as you might with any other person.

As I say, it's very unlikely to do any harm, and it might just improve the situation. At the very least, you will be taking a proactive approach and may feel better as a result.

 

[sistermillicent]

I well understand the feelings of dread, they happen to me too. I have found it best to combat them with a number of techniques which may possibly help you.
First i take some slow deep breaths, I think the idea behind that is that we all function better with oxygen, sounds obvious but it has honestly helped me.
Then i ask myself how I am really feeling, that sounds obvious too but it helps to clarify what the emotions are. it helps me focus.
Then i decide what i need to help me through the feelings, (no, the answer is never a stiff drink) and that helps me to look after myself, it might be a little break with a cup of tea or a chat with someone or a walk or simply a day of being really kind to myself with a treat of a nice home cooked meal at the end of it. my solutions are normally very home and safety oriented, yours may be completely different.
I think it gives me some element of choice about things which often feels so not there when dealing with this awful illness, and a little bit of control back in my own life. the ability to look after oneself is very important.
I hope this helps a bit.

 

[jaymor]

Hi,

Have sent you a private message.

Jay

 

[drmclarke]

Sistermillicent's suggestions all sound good. I visit my mum every 3 or 4 weeks now (it's a 6 hour drive there), and have been forced to recognise that, much as I have always been 'the tough one', I need 24 hours before and another 24 after each visit just to be functional and, yes, to stop physically shaking.
Best things I've found are: swimming, as fast as I can, until I'm too tired to do anything but sleep; spending 24 hours with my 2 year old niece; and, despite other advice here, lashings of gin.... not all at the same time, I should stress!
I'm sure lots of other people have said this, but remember when you go on an aeroplane and they say 'if you're travelling with an infant or an invalid, always put YOUR OWN oxygen mask on first'. You're now in that situation, and things will look much blacker for your mum if you sacrifice your own mental and emotional health.

 

[imekon]

My dad tries to visit mum as often as he can - every other day. I usually will go at weekends. Dad is not in the best of health - in fact, last Friday he had another of his turns and is in hospital again.

My brother thinks he is seeing mum too much and should look after himself. I know dad feels terrible about her being in a home, and tries to see her to reassure her. However, all we get is hysterics, demands to be taken home, threats to kill herself etc.

My question is how often should we see her? There's been a suggestion from the staff of the home that we should cool it for a while (a month?) however within a week they seem to be asking us to visit again.

As it is, mum expects dad to phone at 3pm, and it's always the same - when are you visiting me, why not today? It used to be 4pm but she wanted it earlier. If dad doesn't phone by this time, she goes into meltdown at the home.

 

[1954]

I think you a very good visiting your mum when your anxiety levels are through the roof! Not every child does you know-visit I mean

I literally get up and walk out if I get any behaviour like you said from my MIL! No excuses just go. Could you either visit with some other member of the family or not stay so long? In all fairness she probably would not know when you last went or for how long

Is this anxiety affecting work or any other aspect of your life because you may need to visit your GP if it is

What I have suggested may be of no help but thinking of you and hope things get better for you

 

[starryuk]

Please excuse me for interrupting here, but I just wanted to comment;

I'm sure lots of other people have said this, but remember when you go on an aeroplane and they say 'if you're travelling with an infant or an invalid, always put YOUR OWN oxygen mask on first'. You're now in that situation, and things will look much blacker for your mum if you sacrifice your own mental and emotional health.

Drmclarke, this has absolutely hit home for me. What a simple, understandable way of reminding us all that our own mental health is important in all the turmoil.

Thank you! I shall use these words/this image as my mantra and repeat to myself every day!

 

[1954]

The other thing that occurred to me was that when I am anxious and agitated (which I still do at times get) with my MIL, she absolutely reacts to that and becomes agitated, aggressive and anxious too and it seems to spiral the situation out of control

Easier said then done but could you try 'nailing' a smile on your face?? It works wonders with my MIL .....again just a thought!

 

[Farmergirl]

I had a lot of anxiety visitng mum who went through a verbal aggression stage.
I stopped going for 2 weeks and then when I visited I kept the visits very brief. I kept it brisk and business like with set things i could tell her, and then when we had done I left.
If she got stroppy or rude, Id just say, well, Im off now mum, see you soon.
After I had my little cry in the car park, Id drive home. The verbal aggression stage lasted 18 months - now she's much more placid.

 

[at wits end]

I have found the THOUGHT of visiting my gran often gave me the shakes before I had even said Hello. SO now I dont tell myself or Gran when I will definitely be visiting.

I'll say to myself, I'll go after work on Tuesday. Then on Tuesday I'll say to myself, if I dont feel like it today I shant go til Thursday....that lets me off the hook mentally, and then most times when I leave off work because I haven been stewing on the visit I find I can pop in fairly stressfree, and if not I just miss the visit. She cant count the days anymore, even if I am the only one who visits.