As you may or may not know depending on whether you have read any of my previous posts, my father was put in a home for 3yrs because it was too hard to care for him at home, but in September last year we took him out, as Mum missed him desperately, we didn't think he was getting enough care and she thought she was ready to take on the caring role again, especially as Dad was no longer mobile and thus easier to manage.
The reason I am posting here, is to just warn people about the care their loved ones may receive in homes, and to not always take at face value what care providers claim as fact.
If Dad had remained in the home a week longer I am certain he would be dead by now (some would possibly think that would be a blessing, but when you see him laughing and smiling now at home and exchanging kisses with my Mum, you might change your mind).
In the home, their work health and safety rules created such a situation that they preferred not to stand Dad up and left him lying in bed a lot, so that by the time we took him home, we had to wheel him out in a wheelchair and my husband had to lift him in & out of the car (my Dad is 63), now six months later he goes for half an hour walks around the house unassisted. At one stage, he choked once on his dinner and from that point on they refused to feed him anything but mush, but to this day even though we continue to mush his food up to be safe, we are not 100% sure that this is called for. He constantly suffered urinary tract infections in the home, and were told that this unfortunately was a natural progression of the disease, and yet since being home (6 months now) he hasn't had a single infection since. During the first few weeks of his arriving home he had to be hospitalised and when he was we discovered he had an infection surrounding his lungs that the doctors expect had been there for many months progressively getting worse, this is despite the fact that although he had been sick with fevers over and over again prior to leaving the home and we asked for them again and again to investigate what was causing the illnesses they constantly just claimed it was due to urinary tract infections and again something we would just have to put up with as a natural progression of the disease and that eventually it would kill him. When the doctors drained all the infected fluids from his chest they exclaimed about what a poor ****** he was, and that it must have been causing him a lot of pain for a long time. One simple little drainage episode and strong antibiotics rid him of the infection and again its been six months and no recurrence...all that pain for so long and it could have been fixed if anyone had bothered to investigate. Similarly in the hospital a speech pathologist took a look at Dad and bless her heart the good samaritan told us we should consider no longer feeding Dad and let him die 'naturally' over about a week of starvation because in her opinion he would keep getting infections from food entering his chest instead of his stomach...6 months later...after us refusing to take her advice and thankfully being supported by a good doctor, he's laughing and smiling and hasn't been sick since. Also, recently Mum received a bill for Dad's meds, but instead of getting the usual copy that just showed the ones that we had approved as his prescribed drugs she discovered that the home had been giving him sleeping tablets. Now we don't have a problem with that if we had been informed because we felt it was up to the staff's judgement to prescribe what Dad needed, but what does upset us is that we spent a lot of time worrying about why Dad was so out of it, and both my mother and I on different occasions actually asked if he was being given sleeping tablets (to assuage our concerns) and we were told that he wasn't. Last but not least, my Dad used to have beautiful teeth, but in the last 6months of his stay at the home, we noticed that his breath began to smell a lot and his teeth were often dirty. Since taking him home, mum has had no trouble brushing his teeth daily, but unfortunately now his teeth are badly decayed. What is worse, the good doctor who helped us get him out of the hospital sited that poor dental hygene is likely what caused the original chest infection in the first place as all those bacteria festering in his mouth, found their way into his chest when he was swallowing and breathing.
I'm sorry if this makes it harder for those who do have loved ones in a home, but that is in no way my intention because I absolutely understand (as it was for us) that sometimes there is no other option and I realise that my posting here may unfortunately make that horrible sense of guilt harder to bare and god knows it is very hard already. BUT, I do think it is necessary to widen everyone's eyes to the reality of the care provided at some homes and by the doctors and nurses attending our loved ones, so that if people do have suspicions or concerns they can then take a proactive role in perhaps seeking better treatment of their loved ones.
We found that putting Dad in a home, greatly disempowered us in controlling his care. We were treated as if we had no experience of how to care, despite having done it for several years ourselves before putting Dad in the home. And my great concern is that it is far too easy for homes to blame the disease for the downhill spiral rather than their lack of care. I understand that homes are understaffed and underfunded and naturally their care is not going to be as good as home care can be, but I do not understand why they don't allow the family to be more proactive. We could have arranged to feed Dad each day, we could have helped bathe him, we could have taken him to the doctors, but whenever we suggested such assistance we were dismissed. Unfortunately I think outsiders (and some of us insiders too - i know i've many times wished Dad could die quickly) can't see any point to trying to keep our loved ones healthy, when we know ultimately this disease will kill them anyway..BUT no one can justify Dad having to be in pain for so long, not being given the freedom to walk when he still had the ability (that too could have been arranged with family - I used to walk him daily until he mysteriously became too groggy on every visit for me to dare)as a gentle way to let him go.
No matter how mentally retarded he has become, he is still a human being and has a right to be treated accordingly. Unfortunately for Dad, he can't talk or communicate other than by showing pain in his eyes and this allowed others to abuse their care of him, as he couldn't tell us they didn't brush his teeth, couldn't tell us he was in pain, couldn't tell us they left him in wet underwear for hours on end, and couldn't tell us how desperately bored he was when he was left all day in bed to stare at the ceiling, his only entertainment being meals and visitors. I even suspect at the end that he wasn't even being fed properly because I would come in and find his food tray sitting cold beside his bed with hardly anything being touched. When I would ask the staff they would say he refused to eat, yet I found if you sat there and had patience he would indeed eat and eat until nothing was left on the plates.
Anyway thats my rant for the day, I hope it helps someone. We are not just being silly family members who don't understand the way the disease progresses, Dad today is literally living proof that his illness was not due to his disease.
Last but not least, I will mention here, that Dad lives in regional Australia, so perhaps the situation is better elsewhere. However I would be surprised as he was in the best home available in our area.
The reason I am posting here, is to just warn people about the care their loved ones may receive in homes, and to not always take at face value what care providers claim as fact.
If Dad had remained in the home a week longer I am certain he would be dead by now (some would possibly think that would be a blessing, but when you see him laughing and smiling now at home and exchanging kisses with my Mum, you might change your mind).
In the home, their work health and safety rules created such a situation that they preferred not to stand Dad up and left him lying in bed a lot, so that by the time we took him home, we had to wheel him out in a wheelchair and my husband had to lift him in & out of the car (my Dad is 63), now six months later he goes for half an hour walks around the house unassisted. At one stage, he choked once on his dinner and from that point on they refused to feed him anything but mush, but to this day even though we continue to mush his food up to be safe, we are not 100% sure that this is called for. He constantly suffered urinary tract infections in the home, and were told that this unfortunately was a natural progression of the disease, and yet since being home (6 months now) he hasn't had a single infection since. During the first few weeks of his arriving home he had to be hospitalised and when he was we discovered he had an infection surrounding his lungs that the doctors expect had been there for many months progressively getting worse, this is despite the fact that although he had been sick with fevers over and over again prior to leaving the home and we asked for them again and again to investigate what was causing the illnesses they constantly just claimed it was due to urinary tract infections and again something we would just have to put up with as a natural progression of the disease and that eventually it would kill him. When the doctors drained all the infected fluids from his chest they exclaimed about what a poor ****** he was, and that it must have been causing him a lot of pain for a long time. One simple little drainage episode and strong antibiotics rid him of the infection and again its been six months and no recurrence...all that pain for so long and it could have been fixed if anyone had bothered to investigate. Similarly in the hospital a speech pathologist took a look at Dad and bless her heart the good samaritan told us we should consider no longer feeding Dad and let him die 'naturally' over about a week of starvation because in her opinion he would keep getting infections from food entering his chest instead of his stomach...6 months later...after us refusing to take her advice and thankfully being supported by a good doctor, he's laughing and smiling and hasn't been sick since. Also, recently Mum received a bill for Dad's meds, but instead of getting the usual copy that just showed the ones that we had approved as his prescribed drugs she discovered that the home had been giving him sleeping tablets. Now we don't have a problem with that if we had been informed because we felt it was up to the staff's judgement to prescribe what Dad needed, but what does upset us is that we spent a lot of time worrying about why Dad was so out of it, and both my mother and I on different occasions actually asked if he was being given sleeping tablets (to assuage our concerns) and we were told that he wasn't. Last but not least, my Dad used to have beautiful teeth, but in the last 6months of his stay at the home, we noticed that his breath began to smell a lot and his teeth were often dirty. Since taking him home, mum has had no trouble brushing his teeth daily, but unfortunately now his teeth are badly decayed. What is worse, the good doctor who helped us get him out of the hospital sited that poor dental hygene is likely what caused the original chest infection in the first place as all those bacteria festering in his mouth, found their way into his chest when he was swallowing and breathing.
I'm sorry if this makes it harder for those who do have loved ones in a home, but that is in no way my intention because I absolutely understand (as it was for us) that sometimes there is no other option and I realise that my posting here may unfortunately make that horrible sense of guilt harder to bare and god knows it is very hard already. BUT, I do think it is necessary to widen everyone's eyes to the reality of the care provided at some homes and by the doctors and nurses attending our loved ones, so that if people do have suspicions or concerns they can then take a proactive role in perhaps seeking better treatment of their loved ones.
We found that putting Dad in a home, greatly disempowered us in controlling his care. We were treated as if we had no experience of how to care, despite having done it for several years ourselves before putting Dad in the home. And my great concern is that it is far too easy for homes to blame the disease for the downhill spiral rather than their lack of care. I understand that homes are understaffed and underfunded and naturally their care is not going to be as good as home care can be, but I do not understand why they don't allow the family to be more proactive. We could have arranged to feed Dad each day, we could have helped bathe him, we could have taken him to the doctors, but whenever we suggested such assistance we were dismissed. Unfortunately I think outsiders (and some of us insiders too - i know i've many times wished Dad could die quickly) can't see any point to trying to keep our loved ones healthy, when we know ultimately this disease will kill them anyway..BUT no one can justify Dad having to be in pain for so long, not being given the freedom to walk when he still had the ability (that too could have been arranged with family - I used to walk him daily until he mysteriously became too groggy on every visit for me to dare)as a gentle way to let him go.
No matter how mentally retarded he has become, he is still a human being and has a right to be treated accordingly. Unfortunately for Dad, he can't talk or communicate other than by showing pain in his eyes and this allowed others to abuse their care of him, as he couldn't tell us they didn't brush his teeth, couldn't tell us he was in pain, couldn't tell us they left him in wet underwear for hours on end, and couldn't tell us how desperately bored he was when he was left all day in bed to stare at the ceiling, his only entertainment being meals and visitors. I even suspect at the end that he wasn't even being fed properly because I would come in and find his food tray sitting cold beside his bed with hardly anything being touched. When I would ask the staff they would say he refused to eat, yet I found if you sat there and had patience he would indeed eat and eat until nothing was left on the plates.
Anyway thats my rant for the day, I hope it helps someone. We are not just being silly family members who don't understand the way the disease progresses, Dad today is literally living proof that his illness was not due to his disease.
Last but not least, I will mention here, that Dad lives in regional Australia, so perhaps the situation is better elsewhere. However I would be surprised as he was in the best home available in our area.
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