Hello all,
I am known to lurk on this forum reading and sympathising with others posts, but this is the first post of my own.
Summary of the situation:
My 81 year old dad is suffering from dementia (primary progressive aphasia to be precise) and, having had me relatively late in life, I am a 34 year old male. My wife is 29 years old. We have no children at this point in time, but are in the process trying. We are both relatively early on in our careers and pushing to grow ourselves and have the usual mortgage, bills, cars etc. to contend with and while not living on a knife edge, are not swimming in disposable income.
My parents have been divorced for 20 years and I left home (living with my dad at the time) when I was 18. We have remained in touch over the years as much as most men typically do, but the relationship has always remained pleasant. At present dad lives 5 hours away when traffic is good, and up to 7 hours away with traffic. A round trip therefore takes in the region of 10 - 14 hours without a stop. With very taxing work demands and commitments, it is not so easy or possible to make the trip as often as I would like.
We learnt of dad's condition approximately 18 months ago, when the symptoms were very mild. In fact I would never have suspected dementia and put what I now know were the very early signs down to aging in general. Initially we tried to get him to relocate closer to us as the opposite was not an option due to him living in a remote and job-lacking area, but this never happened as he didn't want to leave 'home' and his partner at the time.
I say this in the politest way possible in order to paint an accurate picture, but all of my life I have known him to be an extremely fiery, volatile, stubborn and proud man. Of course there are many good things I can say around this and he was a good father to me, but this is the best way I can sum up his temperament.
He has/had a long term partner who he met a couple of years before the diagnosis, and is still somewhat active as more of a care provider than partner now. However, she is a 75 year old lady who is now concerned with her own health and is trying to back off as a result.
While the symptoms started off quite mild, his condition has deteriorated significantly to a point where it is no longer possible to hold even the most simple of conversations with him and he cannot he cannot comprehend very basic information. He has stripped his house bare of all possessions, and goes through a daily cycle of packing and unpacking his belonging. I am not sure if this is boredom, confusion, or some kind of OCD behavior. He cannot watch or understand the television as it makes him very frustrated and angry by the people on the screen "talking cr@p" all day every day, how they talk to him and mock him, and craw out of the TV and attack him. All of his many other interests have left him and he seems to have no motivation or interest in anything at all, including food. He is in a constant state of anxiety, paranoia and anger, and is obsessed with the random men and children that are living in his bedroom and garden. He cannot recognize his own reflection and punches every window or mirror he says as the reflection makes him angry. He has made many suicidal threats, but never follows through on them. I could go on, but I suspect you get the idea.
We attempted to move him into our home in order to provide care and he seemed very motivated to do so, but approximately 30 minutes away from his home his whole demeanor changed and he clammed up. He obviously had no prior comprehension as to how far away we lived until we were on the journey, and it was obvious he was regretting his decision. 5 hours later and the moment we pulled onto our drive, he stated he wanted to go home. We made light of the situation and, as it was a long weekend, tried to keep him with us as long as possible and do the things he would normally like to do - go to the local markets, garden centers, country walks etc., but he insisted he needed to go home and became very frantic about it. He would leave the house on his own if we didnt watch him 24/7, lock himself in the car, threaten us etc., until it reached the point that I had to take extra holiday from work and drive him home for his own safety. After driving nearly 14 hours in one day and getting back home, I rang to say I was home and he said he wanted to come stay again.
I have battled with the local social services and the mental health teams for months, but my experience is that support is severely lacking to non-existent. At one point the mental health doctor administered Mementine in order to help with his condition, and for a while this seemed to work well. He calmed, I heard him laughing for the first time in months, and it was possible to hold basic conversations. This was by no means a cure, but it helped manage his daily frustrations and battles. At this point I was visiting as often as I can and he was getting support from his live out partner multiple times a week, but no other social care was in place. I would call him 3 times a day to check he was ok and chat with him as much as possible.
However, for reasons unknown he became very suspicious of and refused to stop taking his medication and things not only reverted to how they were, but declined much further. He no longer understands how to use the telephone and so I cannot communicate with him at all, he is constantly anxious, paranoid, agitated and full of anger. He is in what I would deem to be a very vulnerable position, although he is completely oblivious that there is anything wrong with him or that he is even a pensioner. He thinks and talks like he is a young man in the prime of his life again and the rest of the world are 'idiots'. I have raised the topic of sheltered accommodation or care homes on many occasions, painting how wonderful they will be for him as he will be surrounded by lots of friends every day, but there is no chance in hell he will go into an 'old fogey home'
After some stern words with social services, only today has some kind of care started for him, whereby a support worker will be visiting twice a day, 7 days a week to check he is ok and help where needed. This I thought was a win, but I am now not sure its still the right approach as he is leaving the house with suitcases and others who know him in the area are realising he is vulnerable and riving him home. With the current Corona virus situation and the advice for over 70s to self isolate, his (ex) partner is completely backing off, which she has been trying to do for a while, but this is the opportunity to do so. My dad is therefore deciding to walk 45 minutes at night and in heavy rain to her house for reasons unknown, all while having an obliterated knee and ankle and refusing to use any kind of walking aids.
Continued in comments...
I am known to lurk on this forum reading and sympathising with others posts, but this is the first post of my own.
Summary of the situation:
My 81 year old dad is suffering from dementia (primary progressive aphasia to be precise) and, having had me relatively late in life, I am a 34 year old male. My wife is 29 years old. We have no children at this point in time, but are in the process trying. We are both relatively early on in our careers and pushing to grow ourselves and have the usual mortgage, bills, cars etc. to contend with and while not living on a knife edge, are not swimming in disposable income.
My parents have been divorced for 20 years and I left home (living with my dad at the time) when I was 18. We have remained in touch over the years as much as most men typically do, but the relationship has always remained pleasant. At present dad lives 5 hours away when traffic is good, and up to 7 hours away with traffic. A round trip therefore takes in the region of 10 - 14 hours without a stop. With very taxing work demands and commitments, it is not so easy or possible to make the trip as often as I would like.
We learnt of dad's condition approximately 18 months ago, when the symptoms were very mild. In fact I would never have suspected dementia and put what I now know were the very early signs down to aging in general. Initially we tried to get him to relocate closer to us as the opposite was not an option due to him living in a remote and job-lacking area, but this never happened as he didn't want to leave 'home' and his partner at the time.
I say this in the politest way possible in order to paint an accurate picture, but all of my life I have known him to be an extremely fiery, volatile, stubborn and proud man. Of course there are many good things I can say around this and he was a good father to me, but this is the best way I can sum up his temperament.
He has/had a long term partner who he met a couple of years before the diagnosis, and is still somewhat active as more of a care provider than partner now. However, she is a 75 year old lady who is now concerned with her own health and is trying to back off as a result.
While the symptoms started off quite mild, his condition has deteriorated significantly to a point where it is no longer possible to hold even the most simple of conversations with him and he cannot he cannot comprehend very basic information. He has stripped his house bare of all possessions, and goes through a daily cycle of packing and unpacking his belonging. I am not sure if this is boredom, confusion, or some kind of OCD behavior. He cannot watch or understand the television as it makes him very frustrated and angry by the people on the screen "talking cr@p" all day every day, how they talk to him and mock him, and craw out of the TV and attack him. All of his many other interests have left him and he seems to have no motivation or interest in anything at all, including food. He is in a constant state of anxiety, paranoia and anger, and is obsessed with the random men and children that are living in his bedroom and garden. He cannot recognize his own reflection and punches every window or mirror he says as the reflection makes him angry. He has made many suicidal threats, but never follows through on them. I could go on, but I suspect you get the idea.
We attempted to move him into our home in order to provide care and he seemed very motivated to do so, but approximately 30 minutes away from his home his whole demeanor changed and he clammed up. He obviously had no prior comprehension as to how far away we lived until we were on the journey, and it was obvious he was regretting his decision. 5 hours later and the moment we pulled onto our drive, he stated he wanted to go home. We made light of the situation and, as it was a long weekend, tried to keep him with us as long as possible and do the things he would normally like to do - go to the local markets, garden centers, country walks etc., but he insisted he needed to go home and became very frantic about it. He would leave the house on his own if we didnt watch him 24/7, lock himself in the car, threaten us etc., until it reached the point that I had to take extra holiday from work and drive him home for his own safety. After driving nearly 14 hours in one day and getting back home, I rang to say I was home and he said he wanted to come stay again.
I have battled with the local social services and the mental health teams for months, but my experience is that support is severely lacking to non-existent. At one point the mental health doctor administered Mementine in order to help with his condition, and for a while this seemed to work well. He calmed, I heard him laughing for the first time in months, and it was possible to hold basic conversations. This was by no means a cure, but it helped manage his daily frustrations and battles. At this point I was visiting as often as I can and he was getting support from his live out partner multiple times a week, but no other social care was in place. I would call him 3 times a day to check he was ok and chat with him as much as possible.
However, for reasons unknown he became very suspicious of and refused to stop taking his medication and things not only reverted to how they were, but declined much further. He no longer understands how to use the telephone and so I cannot communicate with him at all, he is constantly anxious, paranoid, agitated and full of anger. He is in what I would deem to be a very vulnerable position, although he is completely oblivious that there is anything wrong with him or that he is even a pensioner. He thinks and talks like he is a young man in the prime of his life again and the rest of the world are 'idiots'. I have raised the topic of sheltered accommodation or care homes on many occasions, painting how wonderful they will be for him as he will be surrounded by lots of friends every day, but there is no chance in hell he will go into an 'old fogey home'
After some stern words with social services, only today has some kind of care started for him, whereby a support worker will be visiting twice a day, 7 days a week to check he is ok and help where needed. This I thought was a win, but I am now not sure its still the right approach as he is leaving the house with suitcases and others who know him in the area are realising he is vulnerable and riving him home. With the current Corona virus situation and the advice for over 70s to self isolate, his (ex) partner is completely backing off, which she has been trying to do for a while, but this is the opportunity to do so. My dad is therefore deciding to walk 45 minutes at night and in heavy rain to her house for reasons unknown, all while having an obliterated knee and ankle and refusing to use any kind of walking aids.
Continued in comments...
