A Place for Mom's Family

Is there anyone who participates in the forums who is familiar with Lewy Body Dementia?

My husband, who is 73, was diagnosed 18 months ago with mild-to-moderate Lewy Body dementia with Parkinsonism.    He's had wonderful care from neurologists, and pain management center doctors.  He's been introduced to physical and voice therapy, but he won't do them consistently at home.

While I've been working continuously ever since on matters legal, medical, caregiving, transportation, managing the household, etc., as his disease has progressed, he has progressed from being willing and cooperative in his care to being combative and suspicious.   I discovered also that he's not been taking some of his medicines as directed.   

The combativeness and suspicion are directed at me because I'm here.  I've had to be deceptive (i.e., Little White Lies) at times.  The guilt is taking it's toll.  

I've spent more time with doctors for my health than ever before.  I am ecstatic when my husband has a good day.  I know that the good days are precious and God wants us to spend time with each other while we can.  My fear is that I'll become too ill to care for him properly. 

In our area (Denton County, Texas) there is no support specific to Lewy Body dementia (LBD).  I recently spent some time investigating dementia-care assisted living communities.  There just aren't any communities specific to his needs, although several managers at two communities have tried to convince me that they are experienced with the specifics involved (even though they have no residents currently with LBD).  I guess that a good dose of scepticism is allowed?  I'll be continuing my due diligence somehow.  

I don't feel as though I'm alone though.  The Lewy Body Dementia Association is a wonderful resource.  There is a LBD support group which meets monthly in Richardson, Texas.  It's a lengthy drive but worth it for the benefits and resources I've received.

Does anyone have suggestions for healthy caregiver coping mechanisms?  My husband does not need to be placed in a dementia care community today.  It will have to happen at some point, and until then, I'm his caregiver.

Current issues:  how to convince him that he should not be driving;  he will not allow home health into the house; convince him of the necessity of exercise and eating regular meals (he's losing weight).  Anyone out there??

Hi Kathleen - I'm happy to hear you have connected with the Lewy Body Dementia Association.  They are the foremost authority on the disease and are extremely helpful and well-run.  Re the driving issue, AAA and AARP give helpful information about this big issue online.  It is one of the hardest things to have someone stop doing.  They give much helpful advice.  Re the home health aide issue, it takes quite some time for many people to allow someone into their home.  May I suggest that you get someone to come in for an hour or so as someone who is there for something else (another little white lie).  It's about connection.  If the person and he have a nice conversation and he feels comfortable, it will make it much easier as they acclimate together.  Re exercise, have you been able to have a physical therapist come to the home?  Many times having someone else insist on exercise (as well as eating) is much easier that you "telling him what to do."  Hope some of this helps.

Thanks for the pointer to AAA and AARP.  I'll consult their websites.  As to home health, I've had an evaluation rep to the house and she posed as a friend for the time she was there, but my husband closed himself in another room.  I've made some progress on the exercising by laying my exercise mat on the floor in the doorway to his study.  He has to step over it every time he goes back and forth so every now and then he thinks to exercise.  These are small steps and probably only temporary measures, but I'll take anything I can get.  Thanks again for your kind response.

T 

Hi Kathleen, I know you posted this awhile ago and might have solved your problem of your Dad refusing to give up driving. What we did with my mother was that I called the DMV and asked them to send her a letter informing her that due to her recent hospitalization they needed her to come in and take a driving test. She never found out it was me that reported her. If she questioned who did, I would just tell her that it could have been any number of the many doctors she had been to lately, (she'd had several hospital stays recently) and that they are required by law to report anyone they suspect to have questionable driving abilities due to health reasons. I knew she would not pass, both due to her dementia and her stroke which affected her vision. She failed the vision test and they rescinded her driver's license and gave her a state issued ID. She was not happy and blamed the test not being fair, but she accepted that she could not drive because she has always been law-abiding. We have many other issues with her, but I thought I would address this one because it was a huge struggle for me knowing she was out there endangering not only herself, but everyone else on the road. I felt guilty at the time, but I have learned since about "therapeutic fibbing" and I no longer feel bad about manipulating situations that benefit her and those around her. Example....due to her dementia, she has all but forgotten about her smoking habit, UNTIL she comes across a cigarette in her apartment. Several times she smoked inside her apartment at the assisted living facility, which of course is against the rules. Her memory was getting so bad that she could barely remember how to light a cigarette, and several times I caught her trying to light one from another unlit one, as if it were a lighter. My brother and I started gradually swiping her cigarettes and lighters whenever we found them around her apartment, till there were none left. She has not mentioned needing or wanting a cigarette in weeks now. If she does, I am going to give her one of those electronic cigarettes as an alternative, and tell her the doctor said she cannot smoke regular cigarettes anymore. I don't know why I didn't think of it sooner! I wish you luck with your Dad. I never knew how hard this could be and I know it is only going to get worse for us. It is nice to have this forum to share with other caregivers. God bless, Tina

Yes, VERY familiar now with Lewy Body, unfortunately. Along with my Mom, I'm helping to provide for the care of my Dad (81) who was diagnosed in October. We feel now that this has been his problem for several years - it answers a lot of questions. Dad fell and broke his hip last April, and that was the turning point that led to the diagnosis. I'm not sure of the stages, but Dad seems fairly advanced. He needs help with all of his ADL's and needs "hands on" help when he moves anyplace with his walker. He's unable to get in or out of bed by himself, or on or off the toilet without help. Toileting is a major problem with both bowel and urinary incontinence. He sleeps about 16-17 hours a day. Dad also has very severe loss of vision from macular degeneration which complicates things. I'm short of time right now, but felt compelled to quickly introduce myself and give you a brief description of where we're at with Dad. I'd love to communicate further and offer one another tidbits of support and suggestions of what does and doesn't work in managing the care of our loved ones.