Old 09-08-2015, 08:30 PM #1 (permalink)
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Default Time to say hello-and a big thank you

I have been a guest to this forum for a year. My mom started showing symptoms suspicios for bulbar onset ALS or a stroke this time last year. (Her sister died from limb onset ALS in 2013.) Mom's official diagnosis of ALS came on October 14, 2014 from the ALS clinic at UC Irvine. Shortly after she documented her wishes and got all of her affairs in order.

My mom has been single for all my adult life, and fiercely independent. I am her primary caregiver. She had subtle speech changes that started about a year and a half ago. The speech changes progressed to slurring by last July and cognitive decline was progressing at a weekly pace. She is 69 years young and I am married and still raising my teenagers. The stress and challenges of being in charge of making her health care decisions and implementing them is all too familiar to all of you.

Mom's neuro agreed that her FTD is severe enough that she does not understand a lot, add to that her speech is gone. She had her PEG placed in May, a very good thing for her. She has a trilogy and cough assist. She can still walk, but is unaware of being safety conscious.

Tilly's posts about caring for her husband have helped me tremendously. The daily frustrations and fears in caring for my mom are so similiar. This site has been the best resource for getting information about the disease, what to expect, how to stay ahead of it, and most importantly how to deal with the emotional demands of it! I'm so grateful for the insight and support that Tilly, Mike, Nikki, and others pour into their posts.


Since March, she has been living with me Monday thru Friday. On the weekends she is at her house supervised by my older brother who still lives with her. My sister drives in from Arizona 5-7 days per month to stay with her as well.
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Old 09-08-2015, 08:35 PM #2 (permalink)
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Default Re: Time to say hello-and a big thank you

The crossroads I find myself at now is I have decided it is time to bring in a part time caregiver. This Thursday will be the first day. I have been really hesitant to introduce someone into her home, but the extra hand is definitely needed. I am not sure what to expect as far as how mom will accept it. I am hoping for some input from your experiences.
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Old 09-08-2015, 09:09 PM #3 (permalink)
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Default Re: Time to say hello-and a big thank you

Hi and welcome. My mum had als/ftd. We had various caregivers at different times during the journey. As long as they were reasonably competent and kind we never had a problem. I assume you are planning to hang around the first day. I don't mean staying by their side the whole time but in the house. It is also worth setting ground rules that are pretty strict at first. You can always ease up. Off the top of my head. No visitors for the caregivers, serious limits on cell phone, no tablet, no personal laundry of theirs to be done, tv rules, can they help themselves to food?

On a separate note you did not mention genetic testing if your family defect is unknown I encourage you to get her tested. It probably won't help her unfortunately but treatment is coming for some of the defects including c9 which with the FTD is highly likely if you are of European heritage. And there is talk of possible prevention down the road. Even if you and your brother have no desire to test now you surely would if there was a possibility of preventing ALS if you were found to be affected. If you don't have an identified defect in the family it would be much more complicated
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Old 09-08-2015, 09:23 PM #4 (permalink)
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Hi Nikki, your tips on laying out ground rules had not occurred to me. I will be adding that to my initial meeting with the caregiver.

I absolutely am motivated to have testing done for a genetic cause. Medicare declined coverage. But I was told by her neuro that mom will be included in a study that will check for a few of the markers. I am frustrated that it feels like her neuro is dragging her feet in getting this part going. Do you know how these time frames work?
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Old 09-08-2015, 10:25 PM #5 (permalink)
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Default Re: Time to say hello-and a big thank you

If you can't get it done for research consider if at all possible as a last resort paying for at least c9 if it fits your ethnic profile. I think it has gone down in price to about 200. It is the most common cause of fals and also has a higher percentage of the ftd in combo. But hound the doctor and find out what they test for and when. The observational studies that I have done at my clinic they say what it is about and hand me the consent then draw the blood or have me do whatever test they need. There is never any wait for another visit for that type of thing in my experience. Maybe they are waiting for funding? Another place to contact is Northwestern. The Siddiques study FALS and last I talked to them ( a couple of years ago) they were taking blood samples from FALS patients. You would mail it in. And I know they give results to patients or survivors. They had stored samples of unidentified defects and when c9 was discovered went back and tested then notified families.
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Old 09-08-2015, 11:48 PM #6 (permalink)
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We do also have the tie in with some European lineage. Our next clinic visit is on the 15th. I will be pushing the testing issue with her neuro. I certainly would be willing to spend some money out of pocket to at least test the usual genes versus not having any samples at all from my mom. My aunt was not tested because we had no knowledge of any other affected family members.

Health history on my mom's side of the family is somewhat similiar to an adopted person because of my mom refusing contact with all of her relatives twenty something years ago. I don't know who is still alive or not or what ailments they may have. It is uncanny how much my mom's als slurred speech sounded like my grandmother's slurred speech. My mom and aunt chalked it up to her drinking (unfortunately she was an alcolholic) but I remember them being particularly angry at not being able to have a clear conversation with her no matter how early in the day.
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Old 09-08-2015, 11:58 PM #7 (permalink)
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Default Re: Time to say hello-and a big thank you

So sorry to welcome you here.

I truly appreciate your thanks because I know in my heart I'm helping, but spelling it out like you did has meant an enormous amount to me. I have felt deeply that I could not run away from ALS after Chris passed because CALS just don't get enough support from the clinics and medical profession concerning the day to day aspect of living with this. So here I am, and glad to meet you even if I wish it weren't in these circumstances.

Now what I found with Chris and carers was - he would become incredibly angry with me, accuse me of not wanting to look after him and all kinds of things. He would complain bitterly that I was leaving him in the hands of incompetent people and pick at every little thing. He would deliberately refuse lots of things from them, especially in their last hour or two then call me urgently for all kinds of things the minute the door closed behind them.

Yet, the caring staff that came into our home found him a complete gentleman who was warm, accommodating and friendly to them. They thought he was an angel and that they had a great relationship with him.

So if you are prepared that something like this could happen, state your needs and your reasons for hiring care and stick to it. Assure her that staff will be scrutinised and trained by you to do everything the right way.

I made a folder of all the stuff they needed to know. I used a plastic sleeve folder so I could easily replace pages as Chris progressed and things changed. I used lots of photos in it to make it easy to follow - eg how to set up the bathroom, how to set up his bed, even how to use the stovetop coffee maker. Chris called it his manual

The first page was my mission statement - I made it clear that he deserved dignity and respect and that it was his home.

I spent time talking with the carers always and kept Chris's needs at the forefront of everything. I made a point of noticing little things and personally thanking them for any little extra thing they did or just for how well they did anything.

A basket of chocolates for carers never goes astray either and encourage them take a few!

All our carers told me during and again after he passed that our home was the best place they have ever worked. I think that a beautiful 14 acre property was part of it, but they said they felt like they were just coming and helping out friends.

It was strange though that for me it was a living hell watching Chris deteriorate and living with the FTD. Somehow I pulled it off to make the best of a bad situation.

Now you have jumped in, you can ask your own questions as things progress and we will be happy to support you.

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Old 09-09-2015, 01:17 AM #8 (permalink)
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I have felt deeply that I could not run away from ALS after Chris passed because CALS just don't get enough support from the clinics and medical profession concerning the day to day aspect of living with this-------- This is so true. There is no way for them to reasonably prepare you for what course your PALS is going to take. And the ability to truly put out there what you are needing help with and get meaningful responses is invaluable for CALS and PALS.

My mom is not at all a social person. In hindsight I can now see the ftd preceeded the als. She already had an established history of being intolerant of people around her, but in the last few years she severed ties with the few friends that she still had. She used to golf and go to the gym but cut those out at about the same time and instead filled her time watching tv and reading. Her only social contact became me, my two siblings, my two kids, and the mail woman. Because of the ftd and still having the abilty to perform her adl's she doesn't seem to understand that her kids have been caring for her full time- which has been helpful in preserving her feeling of independence. I think she is going to have a hard time understanding why someone else is in her house. And my fear is that any amount of explaining is not going to help her comprehend it. But like you speek to Tilly- sometimes it's hard to tell when she's just acting like she doesn't get it. I see her perform for her doctor and the therapists. So it may be like she behaves as though she is hosting the caregiver as a visitor. I've worn myself out trying to prepare for the possibilities, but many of you have gotten past this point so I will too.

We have been maintaining a spiral notebook with daily notes - to keep us siblings on the same page with changes- so integrating the caregiver to that will definitely help. And the extra gestures sure can't hurt.

The folder
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Old 09-09-2015, 04:33 AM #9 (permalink)
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I also had a book and everyone would write notes. I would note anything about Chris having a bad night, or doing well with something or some changes. Staff would write an entry at the end of their shift. It helps keep some continuity for everyone.

Yep Chris would be a totally different person when we were at health appointments. He would be so positive and would at times even request equipment. When it arrived he would look at me like WTF and say - I'm not using THAT!

I did learn to 'play the game' to a degree. Organise what I had to, let Chris make as many decisions as possible, but some things just have to happen too. I guess I would weigh up what battles were important.

When it came to having help here I just had to have this as with 14 acres and I had to work part of the time to pay the mortgage. I would try to let him have as much say as possible in how that worked out but he felt that I should do anything and we didn't need help. He seemed to think that he would not be high care needs until he was totally bedridden. His basic personal care took around 8 hours a day, but because he could just do some standing transfers he felt I should not only do everything, but want to. It's really so sad when the FTD affects them this way. I would have loved to not need money and would have devoted that time to doing everything myself.

I hope you can find that way to distance yourself a little. You know there will be disgruntlement and she will not want what is needed. So set yourself to win the important battles and let what isn't so important slide.

What is important is keeping them comfortable and as safe as possible. You will have read that Chris had many falls, and two of them were serious. They only stopped when he truly could not walk at all.

Chris believed that we did not need anyone here, he did not need help and certainly did not need someone here if I wasn't - right until the very end.

Let us know how it goes on Thursday. Getting a good relationship with the person you hire is important because with the FTD all kinds of stuff can happen that can form a wedge if you don't establish your own good relationship with the staff
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Old 09-14-2015, 09:53 PM #10 (permalink)
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Thursday's meeting with the caregiver, Luisa, and introduction to mom went really well. I am happy with Luisa's demeanor, how she interacts with mom, and her experience with caring for patients. My brother and I explained mom's capabilities and what she needs help with, I went over mom's spiral notebook of notes, and began trying to establish a system for them to communicate. The communication is definitely the most challenging part. Mom showed Luisa around her home and treated her like a guest. I left feeling like mom was accepting of the fact that a caregiver was needed and confident that this was a good match.

My brother arrived back home before the end of Luisa's shift to allow time for her to let him know how the afternoon went. All went well and Luisa was scheduled to return on Friday for the same 12-4:00 shift. I was so relieved at how mom reacted to Luisa's presence, no indication of opposition, no protesting the need to bring someone in to her house.

Then Friday came. My mom called me at 10:30 that morning. She has not made any phone calls to me since January, since she cannot talk on the phone. Of course all I could determine was that it was mom, but I had no idea what she was saying. I interrupted her to ask if she needed me to send an ambulance- I got a nnnnn sound. I asked her to put my brother on the phone and she just kept babbling. I put her on speaker so I could text my brother to call me. He called me and I told mom I would talk to my brother to find out what the emergency was.

My brother explained to me that she had been telling him all morning to call Luisa and tell her not to come back. Boy was I dissappointed. But my brother agreed her request was more out of obstinance to reality than anything else. We explained to her that we need to have a caregiver as she becomes more disabled and we are spread too thin with me caring for my family and my brother needing to work. We decided we would continue as planned.

My brother called Luisa ahead of her arrival to let her know how our mom was feeling and to not take it personal if my mom was not receptive to her. She came as scheduled and the afternoon seemed to go well.

I was not suprised at my mom's reaction, I was only suprised that it did not come out at the start. We'll see what this week brings. Her next clinic visit is tomorrow.
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Old 09-15-2015, 06:43 AM #11 (permalink)
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Default Re: Time to say hello-and a big thank you

Thanks for the update!

I think it's all going really well

Remember what I wrote here about how Chris was towards staff coming in. He made lots of noise at times about it, but when they were here he was an angel even if he refused to let them do some things at times and ran me ragged as soon as they left.

You are doing well in remembering to just constantly reinforce to your mum that this is needed and has to happen. Do it in love, but stand your ground. Don't worry if she complains before Luisa arrives every single day. With FTD they have no problem repeating complaints over and over

You have made a great start, and you began as you mean to go on. That's a biggie!
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