Dear Tara, You and your new husband are truly compassionate and loving folks. My heart is with you as you begin this journey with your grandmother. LBD is a particularly nasty type of dementia, and gives all of us quite a roller coaster ride. But while we cannot change this disease, we can address its issues for our LOs (loved ones) and ourselves.
My own mom is 78, diagnosed with both Parkinson's and LBD, as well as underlying mental illness. Her behavior pre-medication was like your grandmother's (GM).
I'm not a physician, but have had mom in my care for 4 years. And all of are exposed to lots of information - accurate and not. I do have some comments, but please know they come from my experience and what I've learned from sites such as this; from my mom's MDs and a geriatric pharmacologist who's brilliant about meds; and from the clinical literature on this and other medical sites written by some of the country's LBD experts.
My first suggestion is to make sure you both take very good care of yourselves - phsically, emotionally, spiritually (whatever our religion or lack thereof). Have friends, take time for yourselves, each other and your marriage, build into your lives (which can become very frantic) time to relax, de-stress and rest. "Caregiver burnout" is a reality, and can happen to us at any age.
Next, how wise you are to get a new MD. Do all you can to find one who truly understands LBD. EVen some of the best dementia doctors don't have experience with LBD, and as you may know, this disease needs special attention to treatment and medications. Many drugs that work for those with Alzheimer's and other dementias, for example, are very dangerous to our LOs with LBD. For example, insist on only the atypical antipsychotics, not the traditional antispychotics. They can all cause problems, but the clinical literature calls for the former.
I don't know if you are in a small town or larger city, but wherever, get the absolute finest neuropsychiatrist, neurologist, geronotologist you can locate. And be sure your GM's general practitioner (internist) and her cardiologist are also excellent. And they must talk together. People with LBD are extremely sensitive to almost all kinds of meds. Also, sometimes one specialist will treat one problem, and inadvertently make another problem worse. So all the MDs MUST talk together and develop a comprehensive treatment plan. I had to learn the hard way - and my mom suffered for my ignorance - not to assume the MD was right. I learned to check on every med prescribed and asked the pharmacologist about them. Pharmacologists (not your Walgreen's pharmacist, although they can be helpful) know a great deal more about meds than most MDs.
If I had any doubts - and even when I didn't - I went back and rechecked with all her doctors. It is okay to ask questions - even repeatedly!
Read as much as you can at this site. Other people's experience is helpful, definitely. Early on, however, educate yourself by reading the articles here by Dr. Boeve, who writes about supportive treatments and the best meds for those with LBD. It sounds as if you have read about the core features of LBD, so you know that hallucinations are a major issue.
So is "emotional lability," that is, rapidly changing feelings and expressions of those feelings that the person cannot control. So are falls - many LBDers have fluctuating blood pressure or something called orthostatic hypotension, which causes very low BP. Falls can also come from the parkinsomism that goes with LBD for some people.
Irene pointed you to a good laypersons' discussion of the thick saliva issue. I was just researching this for my mom - it is studied in many neurological diseases. An excellent article is "Sialorrhea: A Management Challenge." Find it at
http://www.aafp.org/20040601/22628.html. AAFP is the American Academy of Family Physicians. Its clinical journals cover most significant medical concerns, including LBD. This phlegm issue is a good example of why you will want the best docs for your GM. No good MD "ignores" ANY problem s/he is asked about. This is actually a major problem, and should be addressed. There are many causes, and the MD needs to find that out.
So your dear GM doesn't accept she has a problem... Tara, she can't! That's dementia. By it's very definition, dementia makes understanding what's happening impossible. My mom's confusion has worsened tremendously in the last six months. Sometimes she will say she knows she is confused, but has no concept of why. And I certainly will not even mention the word dementia to her. That could only be terrifying in the worst case, and heard as an insult in the best case. This is not like your husband explaining to you that you have bronchitis and must take your antibiotics. Our LOs reality is not ours anymore - sometimes they interact, but we have to adapt to them, not vice versa. For me, that involves my telling my mom she is likely so tired (one of her major LBD symptoms about which she often complains) because the weather is gloomy. She will always be tired...she will accept my explanation...and would be scared if I tried to "explain" the reality to her.
With time you may well be glad she doesn't remember most of the "episodes." Forgetfulness about such things is a real blessing. Is there any reason she needs to be reminded? Just something else to be scared about. And fear, anxiety, panic in folks with dementia can cause angry, aggressive behavior. I pass off my mom's meds as vitamins and minerals and heart pills. Use whatever your GM can understand that doesn't scare or upset her. Of course she doesn't think she has dementia - again, she isn't able to process that, and really, would you want her to know it? Tell her anything you can that she WILL accept, and just use that routinely.
After a long enough time on the memory and psych meds, she now takes what I offer. It's similar to trying to get a toddler to comply - no confrontation, stay calm, don't try to reason with her, don't do or say anything to upset her, and it's okay to pass them off as something else.
Re GM's stomach problems: get her in for a GI work-up. Get a referral to a good gastroenterologist. She deserves having the causes of this problem pinpointed also. Then you will know if it's something separate from her other problems or an issue on its own. LBD like all neurological diseases certainly affect the autonomous nervous system (controls bladder, kidneys, GI tract, respiratory, etc.), but you won't know without ALL the tests. If needed, get a second or third opinion about what tests are needed. "Numerous" tests doesn't necessarily mean all the right ones.
Throughout this process, remember, you want the MDs talking to each other. In this case, the cardio, the neuro and the GI guy should be talking.
Tara, this is a long post, and please forgive me if it sounds too pushy. Many of us on this journey have learned we must be strong advocates for our LOs; to question and to insist on good care; and to ask each other for help and comfort. I am so sorry you had to find this site, but you will get the strength and wisdom you need here from many wonderful people.
Please keep us posted. All 3 of you will be in my prayers.
Peace, Lin
