Mom has ALS and Dementia

[Navystitcher]

Hi I have been helping my dad care for my mom since I moved back home a year ago last Feb. She was diagnosed with dementia first but I think the dr knew she had ALS (her speech was slurring already at this point) and a few months later she was diagnosed with ALS. Here are my problems. At this point in her diseases she can't talk and is starting to lose her leg strength to walk but won't give up and use a wheelchair so we have to walk behind her every step. We can't get her to sit still for 5 min at a time. We are up and going to the bathroom then back to her chair to be suctioned then she will go lay down for about 2 min then she wants up again. We have her on an anti-anxiety medicine which was helping for quite a while to calm her down and she would sit for longer periods. Now her meds aren't really helping with that and we just upped the dosage. I have gotten to the point that when I have to cook dinner for my dad and children I have to put her in her hospital bed and put the rails up so I don't' have to worry about her falling while I am cooking. The problem with that is she is like Houdini and has figured out that she can squeeze between the mattress and the bed rail. I check on her often while I am cooking and found her yesterday wedged between the mattress and rail with her knees on the ground and her upper body laying on the mattress. Thank goodness the rails come off and we rescued her. You can't reason with her that we are just trying to keep her safe while we have to do things like cook or even just go to the bathroom ourselves. She won't try to communicate with us. I have made picture boards and have tried just yes and no things but she won't shake her head yes or no at all or do one blink for yes and 2 for no. Dad and I are almost at our wits end not knowing what to do to keep her from hurting herself while trying to keep our own sanity. I would LOVE to have some suggestions and if someone has been through this please let me know what you did to get through. We are getting a little desperate here. Thanks!

Kim

 

[Al]

I really hate to say it but you might have to put her in a care facility. I don't like the idea one bit but it might be your only recourse before she hurts herself or falls on you or dad and breaks something on you. Is she being stubborn not trying to answer you or is it that she doesn't understand. You might have to make some difficult choices. Sorry I don't have any better ideas. Maybe someone ellse will.

AL.

 

[lms9258]

Hi Kim, what type of dementia does your mom have? Has her behavior always been this difficult (the not staying in one place longer than a few minutes)? Are her hands to weak to use (as in writing)? And is she using the patch that goes behind the ear, that is used to dry up secretions? (Sorry, I can't think of the name of the patch). I'm giving a lot of thought to your inquiry, as there are few members with this dual diagnosed. I did see three new posts today concerning ALS and dementia. It kind of surprised me. I would PM you, as I also take care of my mom who has both, and could tell you a little more. But I guess you don't have enough posts allowing me to do that. A lot of what you said, is inside of the norm for FTD. The dementia makes it very much more difficult to deal with the ALS.Unfortunately, it can be very difficult sometimes on the forum to get advice, and/or good information when dementia is involved.

Hope to hear back from you,

Laura

 

[Navystitcher]

Hi Laura thanks for the reply. My mom has, God love her, has always been somewhat of a controlling person. She has FTD but up until the last few days her anxiety meds have helped her calm down and sit for longer periods of time. Hospice has been great on getting us meds and changing meds when needed. Yes she has a patch behind her ear and also has drops for her tongue for when the patch isn't doing its job. Today for example it was working great but I think out of habit she just kept going back to the suction device and there wouldn't be much to suck out. They also gave us meds for incontinence to try to help from keeping her from going back and forth to the bathroom. (sorry for the bouncing around just want to answer all your questions to give you the best view of our situation). As for her hands they are pretty much useless. She use to be able to write one word phrases to get her point across but that has pretty much stopped in the last month. The word list I have for her I will lay on the table, put her hand up on in it and she will just move her hand from word to word. Sometimes stopping on things that don't relate to the moment (i.e. I have gagging on there and she will put her finger on that when she clearly isn't gagging). She clearly doesn't like to be restrained but if she isn't she will most assuredly will end up in the floor. Fortunately her falls aren't hard solid falls to the floor (you never hear her fall just find her when you come back through that room lying there). Like when in the chair I think she just kind of "slinks" down into the floor. Amazingly no broken bones yet just some pretty good bruises. Thanks for reading my story and for trying to give me some ideas

 

[Katie C]

Talk to her doctor about adding an anti-psychotic to her med regime. Glen took Seroquel... honestly, the dose had to be increased frequently but it made a HUGE HUGE difference in his behavior. It really helped with the agitation.

We had the same issue with falls... rarely heard him fall, just found him down. My cousin works for a medical equipment firm and suggested a bed alarm.. another great help.

As far as the word lists, etc... loss of executive function is part of the FTD. Your mom is probably losing the ability to actually connect what she is feeling/thinking to the picture on the card. Just like making the connection between choking and putting food in your mouth.. the ability just isn't there any more.

While those who haven't had to deal with it might not get this part... we actually found that losing some use of his hands was something of a blessing. We had baby latches on everything, but Glen was simply unable to manipulate the lock on the front door, so it helped keep him from wandering.

Good luck to you!

 

[lms9258]

When exactly did your mom start the patch?
Laura

 

[Navystitcher]

hum thanks for the info on the anti-psychotic medicine. I'll mention it to her nurse and have her ask the dr on Thursday. As for the alarm we got her a doorbell that the main unit plugs into the wall in a central location in the house then we have 3 of the remotes that we have in various places (bed, couch etc) so she can ring them if she needs help up. The only bad part is she will ring it... then when you get there and try to figure out what she needs she will ring it again and again with you standing there trying to figure out what is wrong. That gets a little frustrating. My mom never had much patience and tended to control everything so this really is just her personified. Kind of a scary thing. Amazing the things you "see" when you are typing what is going on in our life. I should probably keep a journal it would probably help me keep track of things better.
Laura she started the patch probably mid August? You are suppose to change it every 3 days or so but we try to hold off for like 4 or 5 days. When we changed it every day it seemed to quit working as well. Also do you find that allergy season makes it worse? We haven't had rain for WEEKS and last night it finally rained and she wanted to be sucked out the normal amount today but there was nothing there. Wonder if I should ask about an allergy pill. As a kid she always took actifed when it was allergy season. I think the "need" to be suctioned is partly habit.

 

[lms9258]

Talk to her doctor about adding an anti-psychotic to her med regime. Glen took Seroquel... honestly, the dose had to be increased frequently but it made a HUGE HUGE difference in his behavior. It really helped with the agitation.

Katie, my mom was put on the anti-depressant sertraline. It's supposed to help decrease the inappropriate behaviors, and help with her mood. It has done these things, but I am wondering about the Seroquel. What is it? Also, did Glen have one neuro for both ALS and FTD? My mom's nuero totally "plays dumb" where the dementia is concerned.

Laura

 

[shelleynshaggy]

Kim -
Most of my answer is in agreement with Katie's post. These are FTD symptoms - definately look into the meds. As for bed alarm - Katie is referring to an alarm that goes off if she falls (or gets out of) bed. You can get chair ones also.

 

[lms9258]

Kim, my mom was also the impatient type (She makes a nervous wreck out of me if we have an appt. or something). She was also pretty controlling. I guess it's hard for them to be so dependent on others for everything now. She takes glycopyrrolate and atropine drops for drying up saliva. I asked about the patch because we tried it, and she had very adverse effects from it. 16 hours after I put it on her, I found her laying on her bedroom floor at 8 a.m. Apparently she had gotten up to use the bathroom, and just went down. She was off kilter all day, like she was dizzy. The worst side effects were EXTREME agitation and nervousness. She was like the energizer bunny. I had to follow one step behind her all day, worse than taking care of a toddler. She fell again later that day, like 4 feet away from me--I couldn't get to her fast enough. When the hospice nurse came out--for the second time that day--she told me that it was the effects from the patch and the doctor said to take it off. It took about 15 hours for that stuff to wear off. The nurse also said that these side effects are usually seen in men, but my mom sure had them bad. The patch works really good for drying everything up--but my mom can't use it. I thought I was surely going to lose it that day. I just thought maybe you noticed an increase in your mom's activity level after starting the patch. These side effects were not even given in the med information from the pharmacy. Katie referred to child safety devices around the house. We use a lot of those too. It is very challenging to keep your PAL safe when they have dementia.

Laura

 

[Katie C]

Yup, Shelley is absolutely right. it is a passive alarm that lets you know if they've gotten out of bed.. which is when Glen had most of his falls.

As far as medication... Glen took both an anti-depressent AND an anti-psychotic. In fact, when they started the anti-psychotic (Seroquel) they were able to lower the dose of anti-depressent (Celexa). Because of the tendency to not talk (even when still physically able) it is not uncommon for early stage FTD to be misdiagnosed as depression. Glen could not take Ativan (anti-anxiety med)... it made him FAR more agitated than he was without it.

Our ALS specialist helped us locate a psychiatrist with an interest in neurological disorders.. she was then in charge of the various psychiatric medications.

 

[Navystitcher]

wow ok I'll mention the bed alarm to dad. Thanks for the info. Katie was Glen on medicare or hospice? Just curious as that is where we are with mom. I will for sure ask about the meds when my nurse comes by this week. Thanks again for your help

Kim

 

[lms9258]

Just wanted to add, the hospice nurse called about a bed and chair alarm the day my mom was all over the place. They delivered both that same day.

Laura

 

[Katie C]

Kim, Glen was on hospice. His medicare card arrived in the mail the day he died.

 

[Lavender Lady]

Katie C,

that is another reason why waiting 5 months for SSDI approval is wrong we need it immediately some people do not live long enough to even get on board. Your husband got his card the day he died - that is WRONG at all levels. So sorry for your loss.