New and frightened

[Bugsy]

My Dad is 81 later this year and has recently been diagnosed with dementia. He had been covering up for around 2 years before we realised the extent of his difficulties and the strain it was becoming on Mum.

Mum and Dad have been living nearer to me for the last 8 months.

He recently walked 12 miles trying to get home (30 miles away) along a busy motorway. (Returned home by the Police). I've managed to deal with most things, strange conversations, calming down Mum when he has locked all the doors on her, and tring to keep him occupied most of the day.

Today was different and I've just experienced my first attack of fear. I work full time but have the half term holiday, so today I took Dad out, giving mum some respite. We went shopping and had a meal out, all things that he liked to do before dementia. I left them to have their tea together and called back later to find him very agitated, wanting to take further tablets (lorazapan) as he couldn't remember taking one, and then pretending to be drunk, eventually getting him in his pyjamas, he demanded more tablets, he seemed to find it all very amusing. He also dressed the pyjama case cat up in plastic gloves, mum sometimes wears these gloves if her hands crack open.

I do have carers visiting at every meal time and Dad goes out twice a week to a care home. We also have a lady from a local charity help him once a week in the garden.

I have an appointment with my care manager to try to get occassional respite care.

Can anyone give me some guidance please?

 

[Brucie]

Hi Lesley

yes, there is a lot of fear at first, particularly as one realises the enormity of what is happening, with a realisation that it will get worse, at least at first. It will get worse later as well, but in quite different ways.

All you can do is take things a step at a time.

Learn as much as you can about what to expect and how to handle things when you are there.

The wandering is a major problem, and safety needs to be the key thing as far as your Dad is concerned.

We handle the situation at home as it deteriorates, to the point where it is physically impossible to provide the level of care needed, 24 hours each day. At some stage either full time care at home is likely to be needed, or a place at a suitable care home. A care home is the most difficult thing to accept, but is realistically probably the best option for your Dad, ultimately.

People with dementia reach a stage where nothing is familiar, even home, and I'm sure in my case, I wanted to keep my wife at home mostly for my need of having her there. That's only natural of course, but one needs to make the transition to being able to evaluate objectively what the patient needs. Those needs will be different for different people because the condition affects people in so many ways.

I'd think that probably the respite idea is the best way initially.

My best wishes,

 

[Kriss]

Hello Lesley

the word "fear" seems to take on a whole new meaning doesn't it. We fear for their safety, for their feelings, for their dignity, for mums health/feelings/safety, for our ability to cope and so it goes on. There always seems to be something else to worry about, always another level to move on to.

I wasn't sure from your note if taking your Dad out happened on a regular basis or it is something you haven't had chance to enjoy for a while. In my case there was a definite pattern to the upsets in that if we varied the routine he would invariably have a session of "going home" or "going to work" in the evening. I used to take Mum to the supermarket once or twice every week and would take Dad to the cafe for something to eat and drink while Mum got to have half an hour to herself - albeit a working half hour. He was always keen to go out but physically would tire so sitting down for a cuppa would be accepted. Sometimes he would get agitated that Mum might need help - after all that had always been his role - but I could keep him occupied even if it was with the same old patter. However once he had slept off his initial weariness on returning home we would usually have another session of "going" or "who is that woman" - Mum! - or "some men have just gone past the window" or "there's mad people in the front room"etc. The more we recognised the pattern the more we were able to prepare ourselves in advance which did usually ease the situation and distress.

It was only when he made a break for it at night when Mum was on her own and she was no longer able to change his mind that he was admitted to a specialist ward at our local Community Hospital initially for respite. Mum and I were lucky to be able to team up and to call on my husband in emergencies but I know many have to cope alone and I cannot begin to imagine how they manage it.

Getting Dad to take tablets was our problem rather than him wanting to take more. He would never swallow the blasted things and would suck on them (yuk!) but there was many a time that we would find one hidden down the side of his chair! Perhaps you could keep a supply of sweets (maybe those skittles things sorted by colour!) in with his medication supplies to offer if he insists he needs to take some more?

Try to take one step at a time and one day at a time - it's the only way we coped with Dad and now once again I am maintaining my sanity as we deal with my Aunts problems. If you feel a good cry will help the put that record "smile" on and have a good blub - I must have heard that song a million times over the years but it was only this weekend as I was on my way to visit Aunty when it was played on the radio and I listened to the words properly - how does it go? "Smile when your heart is breaking..."

 

[Bugsy]

Kriss

Many thanks for those words of help and kindness, perhaps as you said the day was too different for him, although I do take them out together every weekend and we have dad, my partner and I, with us more recently as well as help from my daughter, it was a bit different. We'd crammed in too much perhaps. A lesson learned.

I will get the coloured sweeties as a standby in future - a great idea.

He was a lot better this afternoon when he came back from his day care centre, a lot more loving again.

It helps also to know that through yesterday's fear came the need to search for help and finding this website gives me someone to 'talk' to who is experiencing similar pain.

Thank you so very much for giving me renewed strength.

Lesley

 

[Bugsy]

Brucie

Thank you for your advice, I have tried to put it off for too long, the help with the respite care. I have managed to put something in motion today. Hopefully Mum will be able to accept this decision as all she wants is to be able to make him better!
My concern is for Mum's sanity as well as for Dad's safety.
He has I think learned from this last 'wandering' experience but as with most things he may not remember!

Thank you for your best wishes and as I said in my previous posting the need for finding this website has at least given me support and some guidance.

Thank you and best best wishes too.