marheid
New member
- Joined
- Mar 3, 2011
- Messages
- 3
- Reason
- CALS
- Diagnosis
- 11/2009
- Country
- US
- State
- Ohio
- City
- LAKEWOOD
Since 1997 my husband (now 70 yrs. old) battled a series of strange symptoms which weren't definitively diagnosed until he became a patient in the Undiagnosed Diseases program at the NIH in Nov. 2009. The diagnosis is frontotemporal dementia with motor neuron disease closely related to ALS. His early symptoms were motor neuron related - drooling, loss of sensitivity in head, weight loss (now 70 lbs.). In 2006 he began to experience head drop and extreme muscle weakness and loss of balance. Around 2003 his personality began to change and cognitive problems developed.
That's the background. Today we are almost destitute - he raided our retirement fund, linked stocks to a large line of credit and spent it (he doesn't know exactly how) and entered into contracts to buy several Florida properties that are seriously underwater. I am not only his sole caregiver - helping him with bathroom functions, with dressing, cutting up his food, etc. - but I also must handle all of the financial chaos.
My questions - has anyone else had to handle this combination with the financial difficulties? If so, how have you managed? Secondly, how do I get a man who once was a handsome gregarious businessman (bank president) to even let me brush his teeth or help him bathe? How do I get him to successfully use the bipap machine (he hates it), the neck brace (he hates it), and all the other medical devices?
Sorry so long but there are so many problems here and we are both 70 - difficult to handle everything. I joined an ALS support group. Everyone is nice but no one has this particular combination of problems.
Thanks for any suggestions you can give.
That's the background. Today we are almost destitute - he raided our retirement fund, linked stocks to a large line of credit and spent it (he doesn't know exactly how) and entered into contracts to buy several Florida properties that are seriously underwater. I am not only his sole caregiver - helping him with bathroom functions, with dressing, cutting up his food, etc. - but I also must handle all of the financial chaos.
My questions - has anyone else had to handle this combination with the financial difficulties? If so, how have you managed? Secondly, how do I get a man who once was a handsome gregarious businessman (bank president) to even let me brush his teeth or help him bathe? How do I get him to successfully use the bipap machine (he hates it), the neck brace (he hates it), and all the other medical devices?
Sorry so long but there are so many problems here and we are both 70 - difficult to handle everything. I joined an ALS support group. Everyone is nice but no one has this particular combination of problems.
Thanks for any suggestions you can give.
