Still awaiting official diagnosis of Lewy bodies for my husband. I have no doubt whatsoever! He is a insulin dependent diabetic, has osteoporosis and previous stroke. Over the years, like many on here I suppose, I did notice changes but a drastic and very nasty fall 4and half years ago was the real start of my concerns!
Jogged along for two years ( a few more trips and slips and other problems ) when his walking became just a shuffle! My immediate thought was Parkinson’s! He was hospitalised on Christmas Day 2016 after a serious fall in the driveway of my sons., where we had arrived for Christmas Lunch. I spoke with the staff and expressed my concerns but they really weren’t interested! The fall led to complications which involved the home care for 6 weeks and nursing for the pneumonia had came home with! I spoke with GP and cos of data protection he couldn’t speak with me. As hubby recovered went attend surgery together and GP arranged for the memory nurse! In May 2017 he was accessed and diagnosided with MCI ! I then spoke wi5 our 3sons who I was surprised to learn had also noticed decline. LPA was duly drawn up and new wills, also his consent to the medical staff have all dealings with me! I again spoke with GP who arranged a consultation with a neurologist. He has since had lots of tests including Brain Scan and lots of which I do not know the names! Christmas 2017 he was in hospital again with gastroenteritis and he really was very disturbed whilst in there! On discharge the memory much Much worse! When we attended consultant the original one had left the trust so we saw a different one! She assures no Parkinsons!! I gave as much info as I could ! Including the fist hallucination and the fall out of bed! She asked him why his walking so bad and arranged for a CT scan on his spine, That was last April a copy of her letter to GP which I have always requested states suspect of Lewy Bodies Dementia!
A few days break away was horrendous! I realised then just how bad things had become!! I had insisted he didn’t drive there ( about 100 miles) and I hired a cab, he hated it! Whilst there he has 24hours sickness and slept most of the time!!on returning when my eldest son arrived he said that the last time ah! I said I expect so, He said NO it is the last time.
!! Two weeks later he was an emergency admission to hospital with. DKA he insists he had taken all injections! IOTs in hospital said ‘at risk of falls’ and gave a walking frame. Due to his frozen shoulder , aftermath of the first serious fall, he struggles to lift from lying in bed to up! He can’t use the walker to much pain in spine!
The car has gone! I had to explain that his reactions were not fast enough , our sons also spoke to him about his lack of strength and he agreed,. Of course now he tells all and everyone that I made him give up driving!
This last four weeks decline has been so so rapid, a few, very few good days apart from that a sort of nothingness!!!!!!! Mobilty worse! I really don’t know how he hasn’t had another fall! Sons have insisted carers (I am myself disabled with medical problems) just for showering and dressing! Privately paying at present ( on credit card) as awaiting financial assessment from government dept. Son managed to get him into the car and he had MRI scan on back 8 days ago!
So back to waiting for appointment with neurologist! Hubby was once a professional actor, so I know when we go to appointments he can put on a good act.
He now has a bed rail to assist raising and stop falling!
The last two out of three nights have been awful!, he was is waking meto sort out the ‘ people he has seen and sort things out’ I have managed to calm , and reassure him , he returns to bed and sleep but of course I don’t!.
I now have to take control of his needles to ensure injections are taken!!!
If this is the beginning what is in the future!!!!
I don’t understand why I can’t get a diagnosis! Even if I do what then!!
Must get him to GP tomorrow , I think he may have an ulcer coming on his leg!!
I am sorry this is so long and draw out but if you have been there and got on and faced the future please let me know the best way to turn!!
By the way, hubby still believes ( or so he saysj) that when they sort his back he’ll be fine!!!)
Jogged along for two years ( a few more trips and slips and other problems ) when his walking became just a shuffle! My immediate thought was Parkinson’s! He was hospitalised on Christmas Day 2016 after a serious fall in the driveway of my sons., where we had arrived for Christmas Lunch. I spoke with the staff and expressed my concerns but they really weren’t interested! The fall led to complications which involved the home care for 6 weeks and nursing for the pneumonia had came home with! I spoke with GP and cos of data protection he couldn’t speak with me. As hubby recovered went attend surgery together and GP arranged for the memory nurse! In May 2017 he was accessed and diagnosided with MCI ! I then spoke wi5 our 3sons who I was surprised to learn had also noticed decline. LPA was duly drawn up and new wills, also his consent to the medical staff have all dealings with me! I again spoke with GP who arranged a consultation with a neurologist. He has since had lots of tests including Brain Scan and lots of which I do not know the names! Christmas 2017 he was in hospital again with gastroenteritis and he really was very disturbed whilst in there! On discharge the memory much Much worse! When we attended consultant the original one had left the trust so we saw a different one! She assures no Parkinsons!! I gave as much info as I could ! Including the fist hallucination and the fall out of bed! She asked him why his walking so bad and arranged for a CT scan on his spine, That was last April a copy of her letter to GP which I have always requested states suspect of Lewy Bodies Dementia!
A few days break away was horrendous! I realised then just how bad things had become!! I had insisted he didn’t drive there ( about 100 miles) and I hired a cab, he hated it! Whilst there he has 24hours sickness and slept most of the time!!on returning when my eldest son arrived he said that the last time ah! I said I expect so, He said NO it is the last time.
!! Two weeks later he was an emergency admission to hospital with. DKA he insists he had taken all injections! IOTs in hospital said ‘at risk of falls’ and gave a walking frame. Due to his frozen shoulder , aftermath of the first serious fall, he struggles to lift from lying in bed to up! He can’t use the walker to much pain in spine!
The car has gone! I had to explain that his reactions were not fast enough , our sons also spoke to him about his lack of strength and he agreed,. Of course now he tells all and everyone that I made him give up driving!
This last four weeks decline has been so so rapid, a few, very few good days apart from that a sort of nothingness!!!!!!! Mobilty worse! I really don’t know how he hasn’t had another fall! Sons have insisted carers (I am myself disabled with medical problems) just for showering and dressing! Privately paying at present ( on credit card) as awaiting financial assessment from government dept. Son managed to get him into the car and he had MRI scan on back 8 days ago!
So back to waiting for appointment with neurologist! Hubby was once a professional actor, so I know when we go to appointments he can put on a good act.
He now has a bed rail to assist raising and stop falling!
The last two out of three nights have been awful!, he was is waking meto sort out the ‘ people he has seen and sort things out’ I have managed to calm , and reassure him , he returns to bed and sleep but of course I don’t!.
I now have to take control of his needles to ensure injections are taken!!!
If this is the beginning what is in the future!!!!
I don’t understand why I can’t get a diagnosis! Even if I do what then!!
Must get him to GP tomorrow , I think he may have an ulcer coming on his leg!!
I am sorry this is so long and draw out but if you have been there and got on and faced the future please let me know the best way to turn!!
By the way, hubby still believes ( or so he saysj) that when they sort his back he’ll be fine!!!)
