Sadness with the passage of time................

[lotusflower]

The onset of summer marks the passage of time and Im feeling imense sadness.... as certain annual events serve to demonstrate the progression of this awful disease.

Last week marked our daughters sports day and summer fete at her primary school (held on the same day) This year my partners progression of the disease was more marked and the event along with others has highlight his diminishing abilities over a passage of time.

Two years ago he was able to drive himself to our daughters school and help put up gazebos and helped set up the event engaging with other parents and freinds.
Last year he didnt drive but enjoyed coming with me to the event and we watched our daughter run her races and then spent time with her at the fair (whilst I ran a stall) giving her pocket money to buy things etc etc. Even buying me drinks and food from the BBQ. And ever the tidier picking up bits of rubbish across the playground at the end of the event.....
This year I collected him just before the event.... it was a very hot day and he sat in the shade but during the races he really didnt understand what it was all about or even why he was there. In the end I felt he wasnt able to enjoy the event and decided to take him home where it was cooler and he would be more comfortable.

It was a very sad day for me....at least our daughter saw he was there and whilst i didnt mention that I had taken him home early, it was more upsetting that he had not even noticed her race, or understood what he was watching or really known who she was.....

The onset of the school summer holiday brings the disease even more into focus.......In years gone by we always enjoyed several holidays abroad including during the holidays and to different places. The last time we travelled abroad was in 2011 .....Last year a very short break demonstrated sadly that that our family holiday - even in this country were finished (too much confusion for partner ). But we were still able to enjoying some really lovely picnic days out to local zoos, parks and places of interest, theatres etc which helped us to maintain a semblance of family life.

This summer it seems that we are facing a diminishing circumferance of local places to visit. The heat hasnt helped, but it seems to be so much harder to get mobilised - his walking is very slow (although he is still mobile) I have to think carefully about where we can go to maintain his and my daughters interests - he does still have interest in things but its so much more difficult.......Even theatre and cinema are now too difficult and I know it will be only a matter of time before his world centers around our home.......Its so sad and Im frightened................

 

[Grannie G]

I have read your post over and over again lotusflower, trying to think of something comforting to say to you.
Your sadness is contagious. You are all too young. xx

 

[Izzy]

Ah how terribly sad. It's bad enough for us to suffer the ravages of this disease when our spouse or partner is older. It must be 100 times harder for you. I can feel your sadness.

Sending my heartfelt good wishes to you and your family. I hope you can manage some nice times together during the holidays. xx

 

[jeany123]

How very sad Lotus flower it takes something like that to mark the deteriation, I feel for you as it sounds as though he was a real hands on father, Our youngest son was about 8 when Allen first showed signs of dementia but he never did much with the children, days out and school things were left to me,
I can understand your sadness and it is frightening, I have no words of comfort for you but i am thinking of you and send you strength for your days ahead ,

Jeany x

 

[seaurchin]

Hi Lotus Flower,

I am so sorry to read your post. I experience similar things with my husband who has young onset Alzheimer's and our daughter who is 11.

We enjoy the simpler things in life now like sitting in the garden and I try to make this area as colourful, interesting and scented as possible. Finding new, perhaps less demanding things to do, is difficult but I found we gradually adapted to the changing circumstances.

I can't say much to help you really but I do have some understanding of the sense of loss and fear you are experiencing and send you my best wishes for your ongoing journey.

xxx

 

[Saffie]

I have no great word of comfort either but had to say how sorry I feel. You - and your daughter are so very young to be going through this tragedy. This day obviously highlighted the deterioration as anniverseries and annual events can do. All you can do, is all that any of us can do, and that is to take each day as it comes, treasure each good moment and try to overcome the bad ones. It's not easy and must be exceptionally hard with such a young child to consider as well, poor love, but what is the alternative. lots of sympathy. xxxx

p.s. You can also keep coming here when it all becomes too much to bear. x

 

[lotusflower]

Thank you and my update....

Thank you Granny G, Izzy, Jeany Seaurchin and Saffie for your kind words ... Such a comfort at such a difficult time. Sorry for not responding till now but sometimes it gets to the end of a long day and I am too tired and the delay was due to some good news.

It's been a more positive few days and have now mobilised myself following months of careful planning and consideration with things coming to fruition.... more for my daughter....
She and I had our first overnight trial break on Thurs leaving Allan at home with carers living in for a 24 hour period. It all went without a hitch and despite a slight bout of agitation he was fine.....it was nerve wracking (sad and lonely - my first holiday without Allan + guilt etc) and hardworking too as it felt like having guests staying.. ( reckon I done a full house spring clean the day before)! My daughter had a great time as we went to Legoland...the carers were lovely - no fantastic- but I feel a novice at home care and there is much I need to change about the way we live to simplify things for those coming to live in our home in the future.....

It's paved the way for me to book a weeks holiday/respite for us in mid August which I so badly need....and i have also booked carers to come in one long day per week for the rest of the holidays.....hoping also Allan can start his day centre soon which will give us another day so we can get out. Fingers crossed...
It's not just the sufferers that embark on a journey and I'm feeling proud of myself to have sorted this on my own....fining the right agency is no easy task and I spoke to a few - as well as visiting several care homes for contrast.... I knew if he went into a care home the rhythms of our daily /family life may be lost whilst at home he retained a sense of the same surroundings albeit with different carers.....

Thank you to all who have helped me on TP to get through the hard times...

 

[Izzy]

That's good news lotusflower. I'm glad you both had a good break. That's good about the day a week too. x

 

[jeany123]

That sounds great lotusflowr I am pleased it went so well, and will set your mind at rest for next time ,.

Best wishes Jeany xx

 

[Jo1958]

Lotusflower, hi
My heart goes out to you, you are being so brave about facing the loneliness of your situation, well done you for being so organised and getting things moving!

Respite is hard, there are no easy solutions but finding the right place is very important and you are obviously working hard to get it right. I hope your break in August works for you all and it's good that your weeks will be setting a new pattern over this holiday.

You can be very proud of yourself for the way that you are coping, I'm full of admiration for you,
with kind regards from Jo