Dementia Partner

[NBAY]

Wife [77], primary teacher retired age 55, diagnosed 6 years ago. Memory virtually gone, cognition difficult, hearing a real problem [won't wear her aids], bladder urgency [no incontinence] sees her looking for and talking about loos whenever out so travel and dining out have become difficult. No direction for getting back after visiting public loos so exits need watching when she visits them. Barely understands mobile phone and TV remote. Has not cooked for 4 years. Married 50+ years.

Two daughters + son, married, working, two kids each. Son & daughter within one hours drive, the other interstate. All empathise sympathise but work five days a week. Most visits are from our oldest daughter and her family, who live interstate. The others rarely visit unless invited to dinner I have been running monthly for some 5 years as we saw them so little. While each "local" has attended most dinners, we have not been invited to dinner or lunch at their place during this time.

My life has become much more limited. There is little said as she is just not capable of maintaining coherent thought for long enough. She spends her time watching TV, snoozing, reading or constantly repeating questions or comments. "Loses" her keys, cards, wallet, bag, watch, phone, etc etc constantly... and panics when she can't find them. I seem to be more of a father-figure to her while she is more child-like to me. Whilst we have both been keen travelers in years past, she is no longer capable, although still claims she is.

Has long forgotten her diagnosis, feeling sorry for dementia sufferers and carers. Very anxious when I am not around [I am to her like the blanket to Snoopy] but has enough cognition to not want to go live in a nursing home. I too don't really want to live a completely solo existence.

Few friends left. One who I now need to take her to see when in Sydney. Mine are mostly scattered far a wide. All empathy but little practicality. All have their own families and issues to deal with. Just makes it a lonely world. On the other hand, I am not ready to retire from life.

I feel I am TRAPPED in a pool with high slippery sides and no way out. Can only paddle for so long. Ideal for her would be to remain at home with a respite live-in she likes and trusts while I go off and do some travel and other things I have in mind. Where do you find such a person? Commit her to a home she will hate? Not nice. Should I resign from life too and not travel any more.?

Where to from here?

[quirkywords]

NBAY,

it is so sad when the person you love changes because of dementia.

Have you contacted the
National Dementia Helpline1800 100 500 ? They can help with the association in your own state.

There is also a website for carers .

This section of the website, carers.dementia.org.au, contains carefully selected content which is relevant and useful to families, friends and carers of people who are living with dementia.

Do you get any respite now?

It can be hard with adult children. When my mum had dementia, my dad was in denial, and so he wouldn't admit he need help. My siblings would drop in for a visit of an hour or so and say I was exaggerating my mum's behaviour. I would stay for a couple of weeks and my dad would go away with my children for a break.

Have you ever asked your children that you would some help and to have respite?

I assume you are getting some sort of help but maybe you need more.

The thing is, if the carer does not look after themselves, they will become sick and then who will look after the person with dementia.

Would you be interested in contacting people in the same situation so you don't feel so trapped. ?

Thanks for writing your post .

Quirky

[NBAY]

Hi Quirky,

Thanks for your comments. You sound like my daughter. I doubt I am in denial. I know the score and that help is needed. How and when to get it is the issue.

Actually, I am not comfortable using dementia as a descriptor for her. Having been to many carer meetings and spoken to many people, I find "dementia" ranges from mild forgetfulness to start with to vegetative or aggressive at the end. She has become increasingly timid, dependent and attached [like oyster to rock], with limited memory, hearing difficulties, lacking internal GPS and cognition issues. No obvious "look" of what some may think of as having dementia. Still looks/sounds "normal". Maybe mildly "senile"?

Aged care has little or no useful suggestions for my situation. Dementia groups are not a great help. Carers sit around and chat about their lives and their partner's symptoms. Interesting for research but no practical help. Few cases are the same or even similar. Some have devoted their lives to caring for their partner. Others are looking for a way out. I guess that feeling depends on how deep the relationship had been to start with and how the carer views his/her own future. A friend who has lost two husbands to dementia [unbelievable!] hung on at great personal expense for 9 years with the first but had the second admitted to a dementia facility after only 2-3 years. Said she couldn't handle the strain again, knowing there is really nothing she could do. Still with strong guilt feelings for both husbands though. But what else could she do?

I can still "escape" from home for hours at a time provided I leave a note as to when I expect to be back... and stick to it... so that is my respite. The time is approaching when that will no work though. I will then need to decide whether living with her outweighs living alone. I have no desire to live alone so expect she will remain here as long as I can handle it. I cannot see her accepting a dementia [or any living away from home] environment so hopefully she will be past caring when that happens. On the other hand, maye it is the time now to start preparing her... eg the home is too big, will need to start thinking about moving... maybe an oldies home with meals and cleaning... etc. Breaking in the concept.

Such respite is also only short term. I would like to do some unfinished travel before my own time expires. Hence my quest for a live-in "friend" for longer term respite... or some other ideas.

Again, many thanks Quirky.