New to all this.......totally overwhelmed

Hello. I have never used a forum before in any capacity but in recent months I have gone through a range of things that now I know I am going to have to reach out to others who have gone through this.

Please bear with me - bit of a story! My father was diagnosed with mild Alzheimers at the end of May, although in hindsight the signs had been there for sometime. Two weeks later my mother was diagnosed with terminal bowel cancer. Suddenly our world became a very alien place. Within 7 weeks from diagnosis, mum passed away. Another story but she died at home and it was made all the more traumatic by the appalling lack of provision of palliative care for her, my sisters and I and of course dad.
In addiction to the shock of all this for us, we have to support dad now and needless to say we have had next to no local support from related services.

Dad’s grief is palpable as he had been married to mum for 62years. My sisters and I team tag every day to make sure he is ok, has company, has a decent meal etc. However this is becoming unsustainable as we have jobs and families.
Dad currently does not meet SS threshold for a care assessment because he is “too independent”.
He struggles with short term memory mostly and has recently been prescribed Memantine.

Recently we have been worried about dad’s increasing apathy and complete lack of desire to do anything other than sit in his chair. We have tried to encourage short walks, drives out, lunch with us in our homes. There is complete reluctance to leave the property. On a good day he will venture into the garden and do very small tasks.

Whoever is there with him will spend a good part of their day there - we have a rota!! However it is so hard as dad is engaging less and less. We are all exhausted especially as we are dealing with our own grief as well as dad’s.

Are we doing too much for him? Should we keep our visits to a much shorter length of time?
We are currently organising some care for a couple of days a week but this is proving challenging, especially as dad just thinks he has a 'head cold" a daily complaint.

What are people’s experiences of Memantine? Dad has been titrated up to 20mg which he has now been on for a couple of weeks. Are the initial side effects those of apathy and depression?

Do we just expect not to expect anything each day other than what presents itself?

Currently it’s a battle of worry, frustration, resentment, guilt and grief, fear of the unknown and fear that we are not dealing with this properly…

Does this sound familiar out there?!

I was widowed at 54, suddenly. I can’t begin to explain how stunned I was for a long time.

The more you do for dad, the more he will come to rely on it. I’m not surprised he doesn’t want to go out, etc. etc. Let him stay home, come to terms with what has happened, and allow him to grieve in his own time.

How old is dad? Is his house suitable for his future needs? Have carers go in a couple of times a day, to clean and prepare a meal. If he just wants sweet stuff, not a proper meal, let him have what he wants, because grief affects appetite and digestion.

If he can’t or won’t look after himself, then tell him he’s heading for residential care if he doesn’t make an effort.
Do you have Power of Attorney?

Thank you for taking the trouble to respond. I’m sorry for your loss and have a little understanding now of how traumatic losing someone you love actually is.

My dad is 84 now. Even without the dementia, he is an introverted personality. it was always mum who chivvied him along, socialised and made friends. My mum, my sisters and I have been his world and now he is so lost.

Your advice is interesting as more people are beginning to tell us exactly the same thing. It’s been three months since mum passed away and dad has to now carve a new normal. Easier said than done but you are right, he is starting to take us all for granted and perhaps becoming a bit lazy…

I belonged to a widows forum, we all agreed that six months is the lowest point of all, so expect this.

If he is dry and warm, and eating some food, even if not a “proper” meal, that’s OK.
My mum survived mainly on Mr. Kiplings cakes for years! If dad isn’t doing much, he doesn’t need lots of food.
I would insist that he had a “cleaner” once a week to do the housework, vacuum, bathroom, etc.
Does he have a washing machine, tumble dryer, dishwasher? All would make your lives easier.

Try to look ahead and anticipate what he will need in the future. Is the house warm, or draughty, for example?
Can he manage the stairs?
Get in the bath?
Does he have a Lifeline pendant?

Yes we have a cleaner once a week who he actually really likes. She’s great with dad.

His home is warm and well equipped. Generally he is physically ok. We do all his laundry, shopping and meal prep.
LPA and attendance allowance all in place.

Perhaps we are making too many assumptions about what is right for him …

If dad likes the cleaner, maybe she could do another day as well, to do the washing and meal prep.? Not only will it make life a little easier for you, but he will probably enjoy having a woman in the house. I found the quietness of the house very difficult, so I had the TV or radio on all day.

Sadly, dad’s dementia means that in time he’s going to need increasingly more support, so this is a good time to gradually introduce a bit more, and a bit more…

When my mum was ill, and I was too, at the same time, I changed from being care provider to managing her care. She then had staff 3 times a day, to dress her, get her breakfast, lunch, put her to bed, whilst I managed her money, picked the flowers and raspberries etc.