New & Struggling

CPL713

Hi everyone,

My mother is 56 and has been living with Alzheimer's and aphasia for several years now.  I am so thankful that she is still able to be home, and that she married a wonderful man who has been caring for her as best he can (seriously, I could go on and on about what a blessing my stepdad has been and how amazed and impressed I have been over the course of their relatively short relationship).

But lately, mom has been so upset.  Up early and READY TO GO -- stepdad can't keep her in the house and is up and outside with her all day.  She can't relax.  She's having wild mood swings and calls me crying every morning (well, stepdad calls me for her -- she can't operate a phone these days). 
She's panicky and manic. 
It's so hard because she has such a difficult time with language, too, but I think she is looking for her parents and others who are deceased.  She has lived in her home for decades but talks about wanting to go to her real house. 
She barely eats, and is convinced there is a girl in the house wanting to harm her.  

I've spoken with her neuro and he has prescribed depakote - today is day 1 on that med, but stepdad couldn't get her to take any of her pills (there are SO MANY, so I don't blame her).  He finally put them in a smoothie and got her to drink that, but it doesn't feel like the most effective way for her to get the full dosage - we could be wrong there, though. 

This has turned into quite a venting session.  I guess I'm just grasping and hoping someone might have a suggestion we haven't tried yet.  

She doesn't seem to really have capacity to do any activities. We've tried coloring and easy puzzles in the past, which used to at least get her to sit with me and chill for a bit while I did the coloring and puzzling.   She has a lot of knick knacks that she used to spend time moving and sorting, but that has largely stopped over the last week.  She used to garden, but that has also become a non-starter.  Now it's just us trying to keep up with her and not make her angry.

I am planning to start working from their house at least once a week - I live an hour away and normally just go on weekends - in the hopes it will at least encourage my stepdad to get out and take a break.  I just feel terrible for her and wish we knew a way to get her to feel better.  I wish she could at least communicate more easily, if nothing else.

I just wish I could help her.  And my stepdad. 

M1

Welcome CPL and so sorry for your difficult situation.  She is fortunate to have you and her husband in her corner.  

Hopefully the depakote will kick in pretty quickly, she certainly sounds like she needs medication to help calm her down and keep the worst of the delusions at bay.  If it doesn't keep after it, because there are numerous other meds that could be tried.

Can your stepdad afford in-home help?  That is the other thing that really comes to mind.  If he could get even a few hours on a couple of days a week it would give him more of a break.  A hospice evaluation also comes to mind, especially if she really isn't eating.

There are many wise and experienced caregivers here and hopefully many others will also have suggestions for you.  Keep us posted, we are all here to support each other in this hard and sad process.

star26

I recommend giving the crushed pills in a much smaller amount of food so you have less risk of a partial dose and more control. For instance, one crushed pill in a spoonful of chocolate pudding or applesauce. Start with the most important ones. And, of course, confirm with the pharmacist that each of her meds can be crushed. I agree that easing the behavior issues are a job for medication right now. And that it might take some trial and error and tweaking. I also like the idea of adding some professional help to further relieve some burden for your StepDad. Even if he says he doesn’t need the help now, tell him he will need it in the future and it’s much better to get someone or an agency on board and acclimated now so it’s just a matter of increasing the hours or days down the road, or in the case of an unexpected emergency.  Welcome to the forum. It sounds like you are already more of a help to your Mom and her husband than you realize.

CPL713

@M1, Thanks for the reply.  I hadn't thought about a hospice evaluation.  I will look in to that.  She's been having a hard time the last few days still, but I'm going to give it a bit longer to allow the med to hopefully kick in.  I'm sitting in her house right now and she's definitely physically quieter today, if not mentally relaxed at least.

I'm not sure if we can afford in-home help, but it's something I'm willing to pursue and help pay for if at all possible.  For now, I'm taking full advantage of my ability to work from home and going to come out at least twice a week so stepdad can get out and take a break.

@star26 - the pudding is a great suggestion!  I'll pass it along.  I was able to get her to take her meds this morning by acting VERY chipper about the whole situation.  But on days when she's mad, she won't take anything offered.  On those days, I think it's just a matter of taking a break and trying again later.

Thank you both so much for the kind responses.  I really appreciate it.

LicketyGlitz

Super agree with everything M1 and star have recommended, CP. I'll add a couple of things you and your step-dad might also want to try...

- A geriatric psych doctor for assistance with medications that are going to help you mom throughout her progression. They specialize in meds for cognitive decline. Ask your mom's primary care provider/neurologist for a referral. Our mom's geri psych doctor was the most crucial person on her care team working closely with us for type of medication, dosage amounts and times, helping us really tailor Mom's medication to what worked for her.

- Pills will also get mushy in certain foods like applesauce, pudding. So you can let 'em hang out for a few minutes in the food and then have your mom eat. If that's successful you can delay crushing them for awhile longer. We hid Mom's pills in raspberries each morning. We stick one in each raspberry then added the berries to her morning oatmeal. It almost always worked! Although that darn* namenda being so big she'd sometimes suss that one out and spit it on the floor when we weren't looking!

Good luck to your family!

MA Taloff

Hi,

I've just joined and this is my first post.

I'm the husband of a woman with EO, diagnosed in August.  I feel like I can't share any of my inner feelings with her unless they are totally benign.  This is really causing me to bunch up inside.  I feel like I've lost my partner and confidant who I can tell things to.  I feel like I'm out here all alone with this and not sure what I can or should say anymore.  Like I have to go into a different place with her now.  Very sad and confused.

MT

Azadi

Besides the medications that my mom's neurologist prescribed for anxiety and agitation, I gave magnesium twice a day which helped her to stay calmer. Too much magnesium makes people go to the bathroom more often.

Arrowhead

We all need to vent from time to time. These forums are a good place for it. Like your mom, carrying on a conversation with my wife is an experience. Most of the time I have no idea what she is trying say. I sometimes think she doesn’t either. She also sometimes thinks someone wants to hurt her or me. There is so little she can do, too. She is also obsessed with wanting to “go home” or to just go somewhere. Luckily, we have a fenced in yard and locked gates. She will spend hours outside just walking around. I let her go out, but I check up on her every few minutes. I’m glad that you get along so well with your mother’s husband, that will be a great help to her. All you can do is what you can do. You’re doing better than you realize.