I live in the UK but am on a long visit to the US, caring for my mother with dementia to give my dad a break and to get a good care routine bedded in with professional care assistants. Both parents are 81 and have good levels of physical fitness and mobility. I have been doing this (with a small break back in the UK) since the end of June when my mother had a steep decline accompanied by agitation and aggression, and my dad had to call me and my sister for help. Previously, he was her sole caregiver, and he minimised her condition to us. She sounded fine on the phone, just getting more forgetful. We didn't have the opportunity to check things out for ourselves due to covid.
This is massively complicated by my dad having recently received a diagnosis of a life-limiting illness. He's in good physical shape for now, and the symptoms are not affecting his daily life yet, but it will of course get worse over the next 2-3 years. He seems very accepting/philosophical but it must be causing him stress at some level.
We've managed to get a new care plan in place, and my mom is benefitting from excellent care assistants, 6 hours per day M-F and 4 hours per day on the weekends. But I feel like my dad needs constant monitoring to ensure he is using appropriate communication skills with mom, and not dominating the care assistant's time by chatting to them and hanging out with them and my mom when he should be catching up on his own sleep, exercise, paperwork etc. - then as soon as the care assistant leaves he expects me and my sister to look after our mom to give him a break!
He doesn't realise that while the care assistant is here, she and I are busy taking dementia care classes, trying to identify medical experts to ensure she is on the appropriate medication, communicate with the care agency to ensure everyone is following the care plan, massively decluttering/reorganising the house to make it safer and better organised to meet both of their needs, etc. etc. etc. We are also trying to find suitable care homes, anticipating that both of them will soon need a higher level of care than can be provided in their home. In their location it feels impossible to find a memory care facility for mom's advanced level of needs - the ones that are available have long waiting lists or have even closed their waiting lists due to overwhelming demand, but it's difficult to contemplate moving to a different state, since they have a huge level of social support here in their community. He is understandably lonely and wants the 4 of us to hang out together and eat meals together, but we try to explain to him that the most effective use of our time is to take turns being with out mom in order to give each other breaks, since she is very hard work due to her anxiety and challenging behaviour. We did have a family outing the other day which went pretty well, but we can't look after our own health and get our own online paid work done if we are hanging out with both parents all the time.
My latest worry is that he has had some incidents of poor judgement and also lack of filter/unawareness of boundaries. He has at least 3 times in the last couple of months said inappropriate things to me, or used poorly judged communication with my mom - 2 of them bizarre and highly inappropriate. He has also opened my bedroom door immediately after knocking, without waiting for me to answer the door (I now lock my door). While he was away for 10 days to get medical testing, he simply assumed that me and my sister would take turns sharing mom's bed since her high anxiety means she can't sleep alone. After a couple of nights, we bought a sofa bed to put in their room - I refused to sleep with my mom because she started poking and prodding me one night, and I was worried she might start hitting me. Also, it's simply disrespectful of my privacy/personal boundaries. Each time I have firmly let him know that his words/actions are inappropriate and have crossed my boundaries or negatively impacted mom, he says he gets it, and promises to do better...until the next time.
He is neuro-divergent and has been clueless about social awareness in the past, but the latest manifestations of this do seem to be far out of character.
An example of poor judgment is that he trusted his neighbour to abide by an informal agreement to pay for some damage and clean up debris caused by the neighbour's large shed being blown onto mom and dad's property in a high windstorm last winter. The neighbour sold his house and skipped town, without doing what he promised. My dad is insured to the hilt and could easily have put in a claim to his own insurers. I estimate the total damage and cost of removing the debris is £4000.
Apart from the poor filter/lack of judgement, I haven't seen other signs of memory loss or dementia symptoms. I have suggested he get a mental health assessment from his GP, but this hasn't happened to my knowledge, and I haven't been able to prioritise it since his more urgent physical illness, and my mom's demanding needs, have taken priority.
My sister and I can't be their full time carers/case managers forever, I have to resume my life in the UK and she has a child who is still school age. Dad seems to be trying, but we can't always be here to police him and monitor the in-home care assistants.
Could my dad's poor judgement/lack of filter be an early sign of dementia even though his memory and day-to-day cognition are still highly functional? In some ways his memory is way better than much younger people: he can memorise long strings of numbers or other data effortlessly, and can do complex maths and other logical tasks, and mechanical tasks such as car maintenance and repair.
It could also be stress from the combination of caregiver burden and his own diagnosis, although he will never admit he is stressed.
I've thought about involving social workers, but both parents go into 'host mode' (or 'showtime!' as our dementia educator so aptly puts it) in the presence of professional authority figures, coming across as highly credible and competent.
I sometimes feel tempted to get social services involved, then wash my hands of both parents and simply let events take their course, even if it means both of their care suffers and that he makes catastrophic financial decisions. This feels unfair to my sister who would then probably take on the whole case management burden, and also unfair to my mom, since it's not her fault that she has dementia.
I do feel that I need to give my dad an ultimatum about getting an assessment of his own mental health and cognitive functioning.
I could also negotiate for him to agree to allow my sister to fully activate her power of attorney, not only for my mom but also for him (my sister is highly competent with legal and financial matters, I have been contributing more to the care planning and medical side).
My dad has been a great dad in the past, and I want to be here to support him through his caregiver crisis and spend what quality time I can with him in the face of his life-limiting illness. But I have to admit that I feel irritated and resentful towards him, and am having a hard time accessing my empathy and compassion right now.
Thank you for reading this far.
This is massively complicated by my dad having recently received a diagnosis of a life-limiting illness. He's in good physical shape for now, and the symptoms are not affecting his daily life yet, but it will of course get worse over the next 2-3 years. He seems very accepting/philosophical but it must be causing him stress at some level.
We've managed to get a new care plan in place, and my mom is benefitting from excellent care assistants, 6 hours per day M-F and 4 hours per day on the weekends. But I feel like my dad needs constant monitoring to ensure he is using appropriate communication skills with mom, and not dominating the care assistant's time by chatting to them and hanging out with them and my mom when he should be catching up on his own sleep, exercise, paperwork etc. - then as soon as the care assistant leaves he expects me and my sister to look after our mom to give him a break!
He doesn't realise that while the care assistant is here, she and I are busy taking dementia care classes, trying to identify medical experts to ensure she is on the appropriate medication, communicate with the care agency to ensure everyone is following the care plan, massively decluttering/reorganising the house to make it safer and better organised to meet both of their needs, etc. etc. etc. We are also trying to find suitable care homes, anticipating that both of them will soon need a higher level of care than can be provided in their home. In their location it feels impossible to find a memory care facility for mom's advanced level of needs - the ones that are available have long waiting lists or have even closed their waiting lists due to overwhelming demand, but it's difficult to contemplate moving to a different state, since they have a huge level of social support here in their community. He is understandably lonely and wants the 4 of us to hang out together and eat meals together, but we try to explain to him that the most effective use of our time is to take turns being with out mom in order to give each other breaks, since she is very hard work due to her anxiety and challenging behaviour. We did have a family outing the other day which went pretty well, but we can't look after our own health and get our own online paid work done if we are hanging out with both parents all the time.
My latest worry is that he has had some incidents of poor judgement and also lack of filter/unawareness of boundaries. He has at least 3 times in the last couple of months said inappropriate things to me, or used poorly judged communication with my mom - 2 of them bizarre and highly inappropriate. He has also opened my bedroom door immediately after knocking, without waiting for me to answer the door (I now lock my door). While he was away for 10 days to get medical testing, he simply assumed that me and my sister would take turns sharing mom's bed since her high anxiety means she can't sleep alone. After a couple of nights, we bought a sofa bed to put in their room - I refused to sleep with my mom because she started poking and prodding me one night, and I was worried she might start hitting me. Also, it's simply disrespectful of my privacy/personal boundaries. Each time I have firmly let him know that his words/actions are inappropriate and have crossed my boundaries or negatively impacted mom, he says he gets it, and promises to do better...until the next time.
He is neuro-divergent and has been clueless about social awareness in the past, but the latest manifestations of this do seem to be far out of character.
An example of poor judgment is that he trusted his neighbour to abide by an informal agreement to pay for some damage and clean up debris caused by the neighbour's large shed being blown onto mom and dad's property in a high windstorm last winter. The neighbour sold his house and skipped town, without doing what he promised. My dad is insured to the hilt and could easily have put in a claim to his own insurers. I estimate the total damage and cost of removing the debris is £4000.
Apart from the poor filter/lack of judgement, I haven't seen other signs of memory loss or dementia symptoms. I have suggested he get a mental health assessment from his GP, but this hasn't happened to my knowledge, and I haven't been able to prioritise it since his more urgent physical illness, and my mom's demanding needs, have taken priority.
My sister and I can't be their full time carers/case managers forever, I have to resume my life in the UK and she has a child who is still school age. Dad seems to be trying, but we can't always be here to police him and monitor the in-home care assistants.
Could my dad's poor judgement/lack of filter be an early sign of dementia even though his memory and day-to-day cognition are still highly functional? In some ways his memory is way better than much younger people: he can memorise long strings of numbers or other data effortlessly, and can do complex maths and other logical tasks, and mechanical tasks such as car maintenance and repair.
It could also be stress from the combination of caregiver burden and his own diagnosis, although he will never admit he is stressed.
I've thought about involving social workers, but both parents go into 'host mode' (or 'showtime!' as our dementia educator so aptly puts it) in the presence of professional authority figures, coming across as highly credible and competent.
I sometimes feel tempted to get social services involved, then wash my hands of both parents and simply let events take their course, even if it means both of their care suffers and that he makes catastrophic financial decisions. This feels unfair to my sister who would then probably take on the whole case management burden, and also unfair to my mom, since it's not her fault that she has dementia.
I do feel that I need to give my dad an ultimatum about getting an assessment of his own mental health and cognitive functioning.
I could also negotiate for him to agree to allow my sister to fully activate her power of attorney, not only for my mom but also for him (my sister is highly competent with legal and financial matters, I have been contributing more to the care planning and medical side).
My dad has been a great dad in the past, and I want to be here to support him through his caregiver crisis and spend what quality time I can with him in the face of his life-limiting illness. But I have to admit that I feel irritated and resentful towards him, and am having a hard time accessing my empathy and compassion right now.
Thank you for reading this far.
