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Godiva

New member
Joined
Feb 2, 2016
Messages
8
Reason
Loved one DX
Diagnosis
11/2015
Country
Uni
State
Illinois
City
CHICAGO
Hi,

I just wanted to see if there where any support groups for CALS who also have FTD. I am not sure if I myself have the right to share since I am not the caretaker, but my husband is and I would like to try to be able to help. My mother in law has ALS with FTD and we right now are trying to deal with her future housing situation since she no longer has income and my husband is unemployed due to him being her caretaker. She has lived alone for most of the year until very recently where we took her to the ER. Since then, she has been in rehab and is likely going to stay for a few weeks. My husband and I have very different opinions as to what is right for her and I would just like to hear from those who are/have experienced a love one having both diseases what have you experienced and how you made your decisions.
 
Hi, Godiva,
You'll find an ALS and FTD link in the menus up top (next to Home). There are several active posters here who have been or are now in that situation.

Of course, you have the right to share whatever you feel comfortable, and we will all do our best to help.

Best,
Laurie
 
You sure have a right to share and ask questions!

Sorry to be welcoming you here.

My husband had bulbar onset ALS with FTD.

Do you have any particular issues you would like to ask about?
 
Thank you Tillie, I have been reading some of your posts. I am sorry for your loss. Thank you for all the advice you have shared.

Right now my family and I are struggling with the next steps for my mother in law. Here is a little background: We started noticing some odd cognitive changes in her in 2014. She was less willing to leave her home, kept repeating stories a lot, started not making sense while talking, and she was having a lot of trouble sleeping. She went to the doctor and they performed a few tests that showed her brain had shrank and we starting working with the assumption that she has FTD. In November of last year, she was finally diagnosis with ALS and right now she is almost mute, while she can still walk, it is very difficult (she is finally using a walker), she needs thickener for liquids but it eating pretty well with fewer coughs. She can hold utensils but is unable to clean herself (both showering and after using the toilet).
So currently she has a private insurance (we live in the States) and does not have disability or Medicaid/care. She does not have any income. My husband has been her caretaker still 2014, actually even before since he was employed by her and since then her business is no longer running. Before rehab, my husband would check on her daily at her house, making sure she got her medications and meals. She lived by herself and I don't think my husband realized that she was unable to clean herself and once I realized what was going on, she went to the ER for lung infection, dehydration and a fib. While at hospital, she tried to remove her IVs and heart monitor many times. She would ask us when she was going home and if she could her clothes on. After a week they finally released her in to rehabilitation. She will be there for 3-4 weeks to work on speech therapy, physical and occupational therapy.

Our family is worried about the next steps as we have a few issues with bring her back to her home. The first is the mortgage is simply too much, the second is her home will be unsuitable for her as it has her bedroom and bathroom in the second floor. The one thing we all know she needs is 24 hours monitoring. We also know she wants to be home.

My concern is how we would afford to keep her at her house, how would the maintenance care be done, who will monitor for 24 hours? My husband and I are in no position to have her live with us (same problem with her house, one room and stairs). I know my husband will do all that is possible to make her happy but my concern is her happiness and what is affordable does not seem to equate the same thing. My husband's plan is to have another family member take care of her so she doesn't go to a nursing, which would be ok, but I am concerned about the 24 hour monitoring.

Tillie, you were able to live with your husband? How do you do that?
 
You have a lot of overlapping issues here, and I'm glad you asked as you have some very tough decisions to make, and it seems like you don't have a lot of time to make them all either. (due to being released from rehab)

I will try to answer everything, but please just ask again or for more detail if I don't cover enough, though I'm feeling this could be a long post anyway.

Firstly, yes, Chris stayed here with me right through and died very peacefully at home.
I must stress that this was my prime goal, so all my decisions were made in light of that. This does not mean that things I did are set in stone as the right way to do anything.

We had no stairs, so that was a bonus, because Chris refused to attempt to be safe and we had some terrible injuries from falls.

Even though we had no stairs, for a lot of the time Chris only lived in half of the house as he either couldn't get to some parts, or even if he could it was too exhausting (it would take 15 minutes to walk through 2 rooms to get to the toilet with walker, yet he insisted he wanted to do this).

I set up the lounge room for him and removed all the furniture from there except the TV. He lived either in the lounge room, or on the back verandah.

In the lounge room he had his riser-recliner chair and hospital bed. On the verandah he had a chair that MND NSW lent us that he was able to use right through.

Our health setup in Australia is very different. Actually it has changed a lot even since Chris passed and I shudder to think of caring for him now with the cut backs and changes. But at the time Chris was awarded a disability pension and I was awarded a carer pension. This was not enough money to live on, but it also gave us access to other services either free or for very low cost.

I was able to finish up most of my 'away from home' work in the first 6 months while Chris was still reasonably mobile and could do some things for himself. I work in my own business. I continued trying to do the kind of work I do from home, but it was incredibly hard as my work needed me to concentrate for decent periods of time, and even when help was here he was demanding. But I waffled along doing some work as I could, and at least I could stop and start and work early in the morning (like 5am) or later in the evening if needed.

We had help staff coming in on weekdays for different lengths of time each day. I only really went out if one of them were here. Occasionally in desperation I would duck out to shop for an hour with Chris settled in his recliner and promising he would not attempt to get up, and no equipment in the room for him to even consider.

I am on 14 acres, so I was also trying to keep up some of the things here, but I had to just let a lot of it go. There's actually a lovely 'after story' about what nature did to heal me and the land as a result, but that's another tale.

So yes, she is going to need 24 hour care/assistance, probably now.

You say you have a relative that could move in with her? So could the lower level of her house be set up? Forget about what the rooms are currently supposed to be. Yes my house looked more like a hospital than a house, but it looked more like a home than any hospital could!

If that relative could do that, could you then set up a roster so that this relative gets some time off, as this will be really important. Maybe your husband could stay one night a week, or spend one day a week there, or you both go over a few evenings or every second weekend or something and give her/him time off?

Or could you get someone to come in and do housework, the shopping or other chores. Could you set up a meal roster through family or other friends?

Could you get hospice in the home involved maybe?

This disease requires us to start thinking 'outside the box'.

I was pretty much alone with my role as CALS. Chris's adult children wanted to bury their heads and stay away as it was 'too upsetting'. So it was me and the health and care team I was able to build, and it was tough. But it was all choices, I chose to have him at home, living and dying with dignity, and though no choices were easy I did find the combination that worked to achieve my goals.

So maybe you first need to get all involved parties together and have a discussion on what are the goals for your MIL. Then start looking for solutions that will achieve those goals?

A goal like - I want to stay in my own home is valid. But can you meet that goal? Maybe you can with some collaboration between family, friends and hired services. If not, what can you achieve that is the closest and prevents her from going into a nursing home?

Now the really hard bit is that with FTD, she can't articulate any real strategies that will suit her to meet the goals. She can know what she wants, but it takes executive function and empathy to put a good strategy in place. So the conversation may be best only being goal setting with her. Then you may all have to hold your own team meetings to work out strategies and only go back to her with options that you have discovered will work. She won't be able to wade through possibilities and ideas and keep up with which are going to be put in place and which ones didn't work out to be workable choices.

This is your thread now, so use it bounce as much as you need to off me, and others that may join in to help out.

I also have a slight concern when you say she is in a rehab unit - I hope they understand ALS and don't push her physical limits.
 
Have you talked to the social worker at rehab? That person may be able to help sort through some issues and should know what resources are available. If she has work credits she should be getting medicare ssdi. If she is destitute she should be getting medicaid and probably ssi
Your mil sounds a lot like my mother who had the ALS/ FTD combo too. Our issue was complicated by the fact that my father simultaneously had a disabling and ultimately fatal illness. We had to move them from their home. They had more resources though.
This relative? Are they volunteering and anxious to help? If not this is highly unlikely to work. This is a very very very hard job even if you are committed and devoted as the CALS here are.
 
Thank you both for your insights and suggestions. Nikki, we are working with the social worker at the rehab. She told my husband yesterday that his mother is "high functioning" which I don't know what that means at all. We are meeting with her ALS care manager next week, so that should help clear up a lot of questions. Tillie, your suggestions are great, that gives me some middle ground ideas to work with.
Again thank you both
 
I would ask what 'high functioning' meant. Usually that is meant in a way of talking about cognition, which she would not be.

Sadly they now know that around 50% of PALS have some cognitive involvement, and the figures suggest that around 30% of bulbar onset PALS have enough cognitive issues to class it as what we think of as FTD.

In fact FTD encompasses any fronto-temporal degeneration, but we tend to distinguish mild cognitive issues away from actual FTD.

It's only been recent years that this has become more widely recognised with ALS.

The most common way it presents is that cognitive changes are noticed before physical changes, but like everything with ALS there are no hard and fast rules about the order or severity of any one area of degeneration.
 
Yes Tillie, I am planning to bring this up during the meeting tomorrow. Also as you said ALS only gets worse so I am wondering if they have experience with PALS. I will report back Friday or tomorrow for those that are interested. For those who are caretakers in USA, have any of you tried to get some sort of a wage for being a caretaker?
 
I am my dad's caretaker and he has ALS with FTD. First let me start by saying I'm sorry for what you are going through. ALS is an awful disease and FTD is just like the icing on the cake (so to speak). I would recommend starting the paperwork for Medicare/disability as soon as possible. We waited way too long to start ours and the financial burden was tremendous. we are still waiting for paperwork to be processed, because even with ALS the paperwork can take up to 5 months to process. We also just started with hospice and its wonderful. I don't know how hospice works for everyone, but for us, we have a nurse tech come mon-fri to bath him and help with a few other minor things for an hour. A nurse comes a minimum of once a week and they can help with prescriptions so you don't have to leave the house to get medical help (for us that was a BIG weight lifted off our back). They also provide a spiritual counseling and caretaker support. If you have any other questions, feel free to email me. I know how hard it is.

Stephanie
[email protected]
 
Thank you Stephanie. We are in the same boat with the paperwork as well. Well, late is better than never. I don't really know what hospice is but our care manager recommends that the best thing for my mother in law after rehab will be moving into a wheelchair accessible place (very few stairs, roll-in shower, raised toilet, bars). The main thing is she will need is maintenance care. Physical therapy, occupational therapy, and speech are not that needed as the diseases are degenerate. She can still work on range of motion, but one has to be very careful not to over work. Therefore our care manager suggest having my mother in law in a familiar surrounding. The main thing is she needs constant monitoring. She can not be left alone and her caretaker needs to be able to monitor changes in swallowing, breathing, and movement. The care manager suggested that private home care could be more affordable (maybe $12 an hour) along with Medicare provided home care (with is limited to 5 hours a day or something), than a nursing home. That said, care taking is a huge responsibility and a tremendous amount. There is some foundation that could offer some payment for being a caretaker but funding varies state to state.

Hospice sounds like a great idea! Stephanie, does your father live with you then?
 
Our care manager mentioned putting in (?) a feeding tube sooner than later while my mother in law while her breathing in strong enough. Can someone explain this to me?
 
You can look through posts in the forum area here for the peg to get more.

PEG is a feeding tube placed directly into the stomach through the skin. You can safely put liquid nutrition and fluids and medications in.

It is best to place the peg before the PALS is losing a lot of weight and is dehydrated, and is in the best possible physical condition. It may prolong life to some degree, but it will really improve quality of life as they avoid choking, and you can get medications into them simply. This can be particularly comforting towards the end when you may need to give palliative meds.
 
Surgery becomes more dangerous as breathing declines so if a person plans to have a feeding tube it is recommended it happen early, either when swallowing is starting to be difficult and/or when breathing is 50 percent or better. If she wants a feeding tube and the doctor is recommending it don't wait. My sister did wait and almost died ( she was very malnourished as well as having respiratory compromise). She now admits it was a huge mistake.
 
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Her doctor did recommend sooner rather than later. Thank you, this makes sense now.
 
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