Question about paranoia - long

[Eibhling1207]

Hi. This is going to start like an intro to a talk show, but first time poster, but I've done lots of searching and reading through the files in the past couple of months -so I feel as though I know many of you already.

A quick background: My mom has bulbar ALS. She was diagnosed in April of 2013 and is completely wheelchair and bed bound. She lost her ability to speak in August of 2013 and uses a tablet to talk, she's been on a PEG since October, and is on a bipap. I live in another state but come in when I can to help my Dad and my Sister as sort of a "relief pitcher". I fly out next week for 11 days, with my main goal of covering enough night shifts so they can get 2 full nights of sleep back-to-back and getting my Sister away for down time as much as I can, Dad doesn't want to leave Mom for more than an hour or two at a time. They do have night time nursing coverage through Hospice during the week, but it still requires one of them be "on duty" all night and weekends as well.

My question: Yesterday my Sister told me that Mom took her aside and told her that she thinks Dad tried to overdose her on her pain medication. He didn't. Everyone is very careful to only medicate her as prescribed and, for pain or secretion medications, only when she tells us she needs it. It currently takes two people to assist her in the bathroom, they just finished installing the lift system last week but she refuses to use it unless she is given no other option. She says it's "too uncomfortable" to use. Last weekend my sister was out of town so my Dad was on "Mom duty" alone, and my Mom texted her many times to tell her she needed to come home to help her in the bathroom because she didn't want to use the lift. Conversations will be started on subjects that Mom doesn't want to talk about and she will just say she doesn't want to talk about it and drives away or asks to be put to bed. This is very unlike her. She is normally a very kind, loving person, thinking more about others than herself.

I've started looking into information on FTD, but I'm not sure - does this sound like it? If so, what should we do? I think we've attributed her behavior to being stuck with this awful disease, but now we aren't so sure. We are just confused right now, and frankly, getting rather P.O.'d at mom and her attitude. The stubborness and paranoia are becoming a problem in provinging her dignity and loving care, and as my family is so sleep deprived their tempers are frayed.

 

[Eibhling1207]

Oops! Mis spoke. The nightime nursing care is through their long term care insurance, not through Hospice. Hospice sends out a CNA 3 times a week to bathe Mom and a visit from the nurse once a week.

 

[dalvin]

I'm no expert on the ftd issue, but think you should have her evaluated for it. Her pcp should be able to get her a referral. Others here can give you better details, such as notes. Thinking it helps to keep a journal of episodes to take for the eval. There are meds that can help although they don't eliminate the issue

 

[SMP51]

on the stubbornness and such I wouldn't think so, but the thoughts of paranoia about Dad overdosing her is another thing.... I think a chat with the doc is in order as Dalvin suggests.

 

[gooseberry]

If your family doesnt do this, I highly recommend it. We keep a log of when my pals takes everything in a notebook. Date at the top of the page, time on the left, med name initials who gave it. Saves confusion with multiple caregivers an dif something has been given

 

[DreamsEnd]

Sure hope Tillie jumps in on this one......This sure sounds like a subject to discuss with her doctor. I've read up to 30% of PALS have some cognitive involvement.
Your mother is so fortunate to have such wonderful support.

Sherry

 

[Barbie]

Even if it is not full blown FTD, many pals have changes in personality. I know my husband has some and is not as sweet and loving as he use to be--even my kids are aware that he has changed, but he does not have FTD, certainly not in my opinion. My husband also questions me about medication and has accused me of giving him the wrong things several times. A log would be a good idea, as well as showing her the medication before giving it to her. I am the only one who gives my husband any meds but I have started showing him the pills before he takes them.

 

[Eibhling1207]

Thanks everyone. I don't know why we didn't think of a log, it's so obvious now. It's a great idea, particularly as we have several people who care for mom every day.

 

[affected]

Welcome and I want to say I'm so sorry about the reason you've joined us.

My husband Chris had ALS/FTD.

One of the critical things is behaviour patterns. Barbie did a great job of describing what is probably normal stress in someone trying to deal with a terminal illness - occasionally lashing out in anger or frustration or whatever. This is different to seeing patterns develop. For many months I thought that he was simply depressed and in shock, then started to wonder if I was some terrible person as he would tell me straight out.

I would suggest that for the time you are there helping with your mum you might set up and take with you something to use to log her behaviour (and the meds log is brilliant). It doesn't have to be fancy, a simple note book with a few columns ruled with headings is as good as anything. This will give you something solid to discuss with your dad and sister and they can continue to use it.

Some of the common main features of FTD are paranoia, but another important one that usually features is a lack of empathy for others, particularly loved ones caring for them, and they NEVER apologise for their behaviour later.

To me this is an important part of the puzzle. If my Chris had displayed the behaviour he did and then apologised later I would have easily believed he was depressed, having trouble coping and many things. Once I knew I was dealing with this I was able to simply love him and not buy into any of the FTD stuff. Well sorry, it wasn't that simple I guess...

But as you describe your mum, so was my Chris - he was the most caring man, kind, gentle, and always worried for everyone else.

I watched this eaten away like his muscles were.

KNOWING this was happening to his brain is what allowed me to cope. There are medications that may help your mum if you choose to have this pursued and diagnosed. The best help to start with will be to log what is happening, look for patterns, so that you can discuss this clearly with your family members and your doctor.

As has been said, it may be FTD, it may also just be mild cognitive changes, it may be depression. The last figure I heard is that 50% of PALS have some degree of cognitive changes, but that sentence doesn't really tell us much IMHO.

The main thing is going to be to find the best way to help your mum, and for you all as a family to cope with her care.

 

[damanda]

My PALS is my Mom, I along with my husband are her only caregivers in our home. We try so hard and she is never satisfied. She gets on line and makes up incredible stories and exaggerations and we are at a loss on how to handle it. Part of us just says let her be and the other part of us is very hurt that we are physically, mentally and financially exhausted and all she can do is complain, lie and accuse. We just started hospice and hope to also get PCA services, but also fear if she treats them like she treats us they will quit. We have explained she is not a hostage here. If she is unhappy she can interview nursing homes. Then she says no and gets sad and we feel bad, a couple days later she is back to her tall tales. Ugggggg! There is not enough wine for this!

 

[Atsugi]

I have an unrelated story that may help.

For several years, I was a telephone customer service person for the VA medical center. Angry vets would call up, cursing and accusing my office of incompetence and not caring. When I would look into their records, I would see the issues they were dealing with. Some were suicidal, PTSD, terminally ill, homeless, or just plain eff'd up by the wars. Two were actually noted to be homicidal. Sometimes, after the phone calls, I would consider the suffering they were going through, and I would actually cry for them. Maybe a little.

But I wanted to help. And I did. I realized that every complaint, every curse word, was simply a symptom of the problem I was helping with. These were clues, telling me how I could help them. From then on, I realized what, perhaps, psychotherapists know: you're not just dealing with mom and dad, you're also dealing with a set of symptoms from the difficult times they're experiencing. It's important to note that it's the disease talking.

Don't expect mom to be "good old mom" like she always was. When mom is good, she's mom. When mom is bad, it's the disease and her stresses talking. Keep her symptoms in a log so your doctor can deal with them. In the end, you might find yourself, as I did, actually proud of the strength and reserve you showed while helping your mom deal with the stress of this disease.

 

[cheerleader]

Mike and Tillie,how did you get so smart!
Ribhling and Damanda, listen to our residence Wise Men and know the disease is talking! All of us caretakers get the repercussions from the disease in varying degrees. It's called, "grin and bear it" and know it's not the real person we love, but the illness. Good luck.
Gooseberry, the log idea is brilliant and Dalvan's suggestion to journal. We all THINK we'll remember everything but....never happens.

 

[gooseberry]

We used I]he log with my parents when they were battling cancer. Five kids helping out led to confusion at times. It was the only way we could be sure things were done and verified. We have used it in every care situation since. It works.very well.

 

[dalvin]

Just to emphasize the importance of logging or journaling, in whatever form. I learned years ago as a service tech that traveled to customer locations that if it isn't written down with date, time, and people involved that it didn't happen. Example, when serviceing a machine, if I found things that needed to be repaired and did not write it down so there was a paper trail, then any conversation with the owner was useless. It could be denied that he or she had been notified of the problem.
The same can be applied here. If it's not written down you can be seen as exaggerating or even whining about your situation. With the journal you can show patterns.
Remember the thing from high school. The five questions. Who, what, when, where, how

 

[gooseberry]

Also if you are using a journal/log it is best to simply say what you observe without opinion. For example, instead of she was combative, you could say she hit my hand 3 times when I tried to brush her hair. Takes all the emotion out and is more objective for the doctor in identifying the exact behavior.