My mam and dad have been carers for each other for many years. My brother and I have dipped in and out of their lives as and when necessary. I moved into a private rented flat next to their council flat two years ago. The last year has been very difficult to cope with mainly because of sleep deprivation.
These are some of the problems they face.
MAM
Unable to follow conversation
Unable to dress if buttons and zips are involved
Not washing
Increasing number of falls
Put teabags in the toaster to make toast
Can't work the washing machine
Can't follow TV programmes
No concept of time once the sun goes down ( daytime also now)
Gets up and dresses thinking it's morning several times in a night
Can't remember most of what happening on a day to day basis
Doesn't use the walking stick she has used for years
Falling more often
Often confused as to whereabouts of others
Emotional empathy has switched off
Vulnerable mental health for decades
Medications including CD drugs for osteoarthric pain and antidepressants
Difficulty staying upright in a sitting position
Not heating microwave meals enough
DAD
Hallucinations I.e. Seeing dogs or a woman or hearing music
Thinks that people are talking loudly outside his bedroom window
Forgets we were at the bank and wants to sort out accounts again
Thinks someone taking money out of bank when it was him
Verbally aggressive and controlling.
Barely mobile falling more often
Tries to cook but not safely, i.e. Dropping pan of hot food, leaving electric rings on with cloth on it. Forgets a pan is on or something in the oven
Threatening to accidentally hit me with a baseball bat
Macular degeneration can not see more than glimpses
On the 1/1/2015 dad was very poorly and went into hospital, where he is at the moment. Mums dementia went into a rapid decline not because he was in hospital but incase he came home. Two weeks ago mum had a UTI (hard to believe the effect this has), she is now on the same ward as dad.
At the meeting with Drs it was explained that he has a problem in his brain where some blood vessels have collapsed and his swallow is affected. He pulled out the first feeding tube and tied knots in the second one to prevent feeding. My brother and I agreed with the doctors to let nature take its course.
Last week we had a best interest meeting with the hospital SW, physio and OT. Dad has been found not to have capacity (he wants him and mum to go home where he will look after her). Mum was found to have capacity and they wanted to sent her home with carers coming in during the day.
This was the point when I howled and cried because I have reached the point where I can't do it anymore. But what happens at night, say I, that's when I need help. Silence. I should have walked away years ago I say resentfully. Silence
They will send dad to a CH when an assessment bed becomes available (we have no financial assets but dad brother and I have about 130 years of working life between us albeit always in low paid jobs).
My brain is reeling, looking for solutions. I'm talking to one of the nurses and thinking if mam goes in a home maybe I can cope at home with dad. Next morning I get a phone call from the duty SW at the hospital saying dad is coming home the next day but he's not sure if he can get carers in that quick but he will let me know. Later that day the OC rings me asking questions about the home environment etc. I thought dad was going into a home, says I. Next morning dad is all packed ready to go home. My brother and I go to the SW office and ask what is going on. A different duty SW says he can't go home and the best interest meeting plan should be adhered to. She tells us that both are waiting for an observation bed at a CH (is that the same as an assessment bed?).
Dad is furious, he tries to strangle me and calls me some dreadful names.
I hate this dementia journey x
These are some of the problems they face.
MAM
Unable to follow conversation
Unable to dress if buttons and zips are involved
Not washing
Increasing number of falls
Put teabags in the toaster to make toast
Can't work the washing machine
Can't follow TV programmes
No concept of time once the sun goes down ( daytime also now)
Gets up and dresses thinking it's morning several times in a night
Can't remember most of what happening on a day to day basis
Doesn't use the walking stick she has used for years
Falling more often
Often confused as to whereabouts of others
Emotional empathy has switched off
Vulnerable mental health for decades
Medications including CD drugs for osteoarthric pain and antidepressants
Difficulty staying upright in a sitting position
Not heating microwave meals enough
DAD
Hallucinations I.e. Seeing dogs or a woman or hearing music
Thinks that people are talking loudly outside his bedroom window
Forgets we were at the bank and wants to sort out accounts again
Thinks someone taking money out of bank when it was him
Verbally aggressive and controlling.
Barely mobile falling more often
Tries to cook but not safely, i.e. Dropping pan of hot food, leaving electric rings on with cloth on it. Forgets a pan is on or something in the oven
Threatening to accidentally hit me with a baseball bat
Macular degeneration can not see more than glimpses
On the 1/1/2015 dad was very poorly and went into hospital, where he is at the moment. Mums dementia went into a rapid decline not because he was in hospital but incase he came home. Two weeks ago mum had a UTI (hard to believe the effect this has), she is now on the same ward as dad.
At the meeting with Drs it was explained that he has a problem in his brain where some blood vessels have collapsed and his swallow is affected. He pulled out the first feeding tube and tied knots in the second one to prevent feeding. My brother and I agreed with the doctors to let nature take its course.
Last week we had a best interest meeting with the hospital SW, physio and OT. Dad has been found not to have capacity (he wants him and mum to go home where he will look after her). Mum was found to have capacity and they wanted to sent her home with carers coming in during the day.
This was the point when I howled and cried because I have reached the point where I can't do it anymore. But what happens at night, say I, that's when I need help. Silence. I should have walked away years ago I say resentfully. Silence
They will send dad to a CH when an assessment bed becomes available (we have no financial assets but dad brother and I have about 130 years of working life between us albeit always in low paid jobs).
My brain is reeling, looking for solutions. I'm talking to one of the nurses and thinking if mam goes in a home maybe I can cope at home with dad. Next morning I get a phone call from the duty SW at the hospital saying dad is coming home the next day but he's not sure if he can get carers in that quick but he will let me know. Later that day the OC rings me asking questions about the home environment etc. I thought dad was going into a home, says I. Next morning dad is all packed ready to go home. My brother and I go to the SW office and ask what is going on. A different duty SW says he can't go home and the best interest meeting plan should be adhered to. She tells us that both are waiting for an observation bed at a CH (is that the same as an assessment bed?).
Dad is furious, he tries to strangle me and calls me some dreadful names.
I hate this dementia journey x