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?!