There is no cure for dementias or Alzheimer’s Disease. Once the journey begins, its course is downhill, sometimes gradually, sometimes rapidly, but always in decline.
There may never be a way to prevent these neurological diseases from occurring before the damage is done – I’m going through several neurology-related courses right now and the professors teaching these courses readily admit there is more about the brain’s chemistry, physical structure, communication systems, and function that is not known than is known – but once dementias and Alzheimer’s Disease have begun to damage the brain, there is no remedy.
The brain is a unique organ in the body in that once cells in the brain die, they do not regenerate themselves. They’re dead and gone.
The neurological damage of dementias and Alzheimer’s Disease cannot be reversed.
So when Mama’s diagnoses came in late July 2010, I had a unique and personal perspective on what that meant for her and for me. “Mid-to-late-stage vascular dementia and mid-to-late-stage Alzheimer’s Disease” from the psychiatrist at the geriatric psychiatric hospital that Mama was in after her meltdown on July 10, 2010 didn’t surprise me. But I knew there was no cure, no going back, no fix.
I transitioned, probably more easily than most family members who hear this for the first time, to “what can we do to stabilize?” The psychiatrist assured me that stabilization was possible, but it would take time and tinkering with the medicines that the symptoms of dementias and Alzheimer’s Disease demand.
I was almost convinced that nothing could turn around the psychosis that Mama was experiencing in full throttle in those days. I realized my own helplessness to help her and make it better for her. I experienced a lot of guilt and inner turmoil because nothing I was doing was working and I knew how much she was suffering and how afraid she was and it was all out of her control and my control.
I was also extremely sad. This was not the mama who had, with open arms along with my daddy, brought my sisters and me into their home through adoption, loving us with a fierceness and tenacity that we struggled with at times but also realized over time was the real deal. This was not the mama who opened her arms, her heart, her door to me when life was banging against me and threatening to destroy me. This was not the mama who put up with me and loved me in spite of myself, at times, unconditionally.
How could I not do the same for her after all she (and Daddy) had done for me? They loved me in spite of myself. How could I not love Mama in spite of herself? This was a no-brainer for me.
It was during the geriatric psychiatric hospital stay that I learned about many of the most-commonly-used medications used to control and improve the symptoms of dementias and Alzheimer’s Disease.
All the medical professionals involved in Mama’s care were very careful to tell us repeatedly that the medications they were trying with Mama were controlling symptoms only.
Since Mama was experiencing hallucinations, paranoia, and delusions, the psychiatrist prescribed SeroquelXR (50 mg twice a day), Citalopram (40 mg a day) for anxiety, Namenda (generic: memantine) for cognition enhancement, Exelon (24-hour-patch/4.6 mg – this is also available in oral form since the patch can cause skin irritation) for cognition enhancement, and Clonazepam (.25 mg/PRN) for extreme agitation as the dementia and Alzheimer’s Disease medication regimen for Mama’s symptoms.
And it worked.
I gave Mama Clonazepam only twice in two years (it knocked her out and I didn’t like the side effects, but it was for extreme agitation and there were only two times when she was agitated to the point of fearing for her heart health, that I decided to give it to her). The rest of this combination of anti-psychotic, anti-depression, anti-anxiety regimen gave Mama a better quality of life from near the end of July 2010 until her death on August 14, 2012.
With the exception of SeroquelXR.
Just after Thanksgiving 2011, Mama awoke one morning with tardive dyskinesia. At the time, I didn’t know what it was, but Mama was scared (and so was I as I watched the involuntary movements that rhythmically were going through her body).
I got Mama to the ER, where a nurse practitioner, who refused to listen to me (and the nurses who were with Mama and me and with whom we were talking to all day) for eight hours, was convinced that the tardive dyskinesia was Mama’s pacemaker going haywire.
So we waited all day in the ER for a cardiac consult that tested Mama’s pacemaker and confirmed it was working properly and not the problem (which I’d been telling the nurse practitioner all day because we’d just had it checked the week before).
Finally, the nurse practitioner decided to admit Mama, and late-stage tardive dyskinesia was diagnosed with the culprit being SeroquelXR.
Mama had Lewy Body dementia as well. It was not diagnosed (a firm diagnoses cannot be made without an autopsy of the brain, but symptoms are quite obvious while our loved ones are living), but I’d seen it, not knowing what I was seeing (I began researching it after Mama’s full-blown symptoms starting appearing in January 2012), just after Mama had gotten out of the geriatric psychiatric hospital when we were going to doctors’ appointments together.
Anti-psychosis drugs and Lewy Body dementia don’t mix well together. Mama was fortunate that she was able to stay on SeroquelXR as long as she was, and for that I am thankful. But we reached a point where we had to choose between mood and hallucinations/delusions.
I chose to help Mama with her mood. I knew I could handle hallucinations and delusions (although, in reality, what I thought I could handle still turned out to be surprising and perplexing, causing me to have to scramble to try to adjust with honesty and integrity even when things got way out of my comfort zone), but I could not handle Mama’s mood swings with these diseases.
So we (the hospitalist and I) went with Depakote Sprinkles (100 mg, 3 times a day – I could mix it with foods and drinks and make it easier for Mama to take) with the hospitalist telling me that Mama’s hallucinations and delusions would come back.
They did, but they were not particularly scary for Mama (I think because I was there), but they often threw me for a loop initially. I’m probably the least spontaneous person on the planet, so adjusting to these was particularly hard for me, but eventually, I got better at dealing with them and easing Mama’s mind. A new normal for both of us.
These medications that Mama was on are not the only ones used to treat the symptoms of dementias and Azheimer’s Disease, but they are the most common in the mid-to-late stages.
In the early stages, Aricept is commonly prescribed. From everything I have read and heard, it’s efficacy is limited. I believe that this is because by the time most people are diagnosed with dementias and Alzheimer’s Disease, they are already beyond the early stages of the diseases.
I would caution all of us as caregivers to make sure our loved ones are not over-medicated. Many of the anti-psychotics and anti-anxiety drugs can anesthetize our loved ones to an almost-coma-like state, which is not what we or they want or need.
We are their advocates. We are the only people who can fight for our loved ones medically. We have a responsibility to make sure our loved ones suffering from dementias and Alzheimer’s Disease have the best quality of life they can have for as long as they can have it. This is our obligation to them.
So unless anti-anxiety drugs are absolutely necessary and unless morphine and its derivatives and cousins are absolutely necessary, please don’t give them. They deprive our loved ones and they deprive us of quality time in the face of these terminal diseases. Nobody wants that.
There are medications that I haven’t talked about in this post. If you want to know about any medications that your loved ones may be taking, please comment here or email me at email@example.com. I’ve researched many, if not all, the medications used to deal with the symptoms of these diseases, so I’ll be happy to help you with any questions you may have.
Thanks for sharing this. My Mom just get’s mean — which to me is because she is scared and anxious. Ativan helps and they only provide on a limited basis and infrequently. They will premedicate her for my Dad’s funeral knowing it will be difficult given the new scenery and LOTS of new faces.
My Mom has multi-infarct dementia. She for certain has Vascular Dementia and presents as if she also has Alzeheimer’s. I’ve heard that both Zoloft and Xanax are helpful. My Mom is becoming “verbally combative” – I was told because she still enjoys a shot of bourbon with club soda nightly, they won’t give her either. Right now, the fights would escalate if that one nightly ritual was taken away.
Do you have any suggestions?
You’re welcome, Kay. Mama had multi-infarct dementia as well (along with Alzheimer’s and Lewy Body dementia) and until we got medication, she could be hell on wheels. For the same reason your mom is mean – it’s fear and anxiety, both over what’s happening to them and the distorted perception they have of the world around them, including us, their daughters, their friends, the people who love them more than anything.
Mama was verbally combative – my book has the details of how bad it got and even now when I think about it, it is kind of beyond my logical, sane comprehension, especially when she went public a few times – as well. Citalopram at 40 mg (the highest dosage) helped a lot with Mama’s anxiety. I’d personally stay away from Xanax (because of the numbing effect and it’s highly addictive), even though it’s another anti-anxiety medication.
Zoloft is an antidepressant and may or may not help, considering the neurological damage from your mom’s small-vessel ischemia. Antidepressants depend on intact receptors and pathways to alter brain chemistry, and I personally don’t know how effectively it would work in a brain that is littered with damaged/destroyed receptors and pathways.
Mama didn’t do well on Ativan, but I think the hospital gave her too much the couple of times they gave it to her. If your mom does well on a small dosage (it’s another anti-agitation drug like clonazepam) when her agitation gets unmanageable, then keep her on it.
I would suggest, if you haven’t already done so, getting a geriatric psychiatrist involved to look at the medications she’s currently taking and see if he can add anything to the regimen that will help with fear and anxiety.
She may be having some psychosis as well, so if that’s the case, it will definitely put the fear and anxiety on overload and, at some point, she will spiral out of control and have a meltdown and need psychiatric placement for a short period of time to stabilize the symptoms (it’s a horrible to get to for us and them, but by the time it happened with Mama, it was the only thing left to do). A good geriatric psychiatrist can prevent it from getting that far (I’m not saying it will, but reading your posts is like a mirror image of this part of the journey when I went through it with Mama).
And I don’t see the harm in a shot of bourbon with club soda, at least until the symptoms she’s experiencing can be managed (some of those medications are counterindicated with alcohol), so if were me, I’d demand that the staff make sure she has it. After all, you’re POA and you’re spending a lot of money (well, it’s her money, but you’re responsible for it) for her to live there, so they work for you. This is not an unreasonable request.
I pray everything goes well with your dad’s service tomorrow, for your family and your mom, and I pray that it will help you all in the grieving process – it never ends really, it just gets a little less visible on the surface with time – for your dad, although I imagine there’s a lot of grieving for your mom tangled up in your grief for your dad and it may take a long time to untangle all that. Be kind to yourself, be gentle to yourself, and be patient with yourself. Love and hugs!
Thank you so much Sandra for your heartfelt post on your experiences with this. 🙂
Thank you, Judy! I really do this to help others who are and will be going through the journey with their loved ones.
You are a remarkably tenacious woman. I am in awe at how diligent you were with your mom. Most of us would be ready to give up but you didn’t. My poor FIL had/has so many issues and such a resistance to help, we weren’t able to do anything to help him. He ended up mysteriously leaving our state and we can only pray someone is helping him with his problems – memory, hallucinations, paranoia, depression, etc. I don’t think I could have done all that you did.
Thank you, Cindy! And I do think you could and can do all of this and more. Ten years ago, I wouldn’t have believed I could do everything I did for and with Mama. But, in the end, you do what you have to do because you’re “it.” Of course, I know I had an awful lot of help from God along the way, so He always gets the credit for enabling me to be there the way Mama needed me to be there for her.