Old 06-09-2014, 10:33 AM #1 (permalink)
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Hello all,

My father (Mike) was diagnosed with ALS and FTD on January 9th, 2014. Brief history: My father was making very poor decisions for the past few years which just didn't add up. In the beginning of June 2013 he began slurring his speech. We thought he had a stroke and took him to the ER. The MRI showed a mini-stroke from long ago but was in a different part of the brain that would not effect his speech. By July we could barely make out what he was saying and he began choking on food and drink. By the end of August 2013 he could only and barely say "yes" and "no". He was finally referred to the ALS clinic but we could not get in until January. In the meantime his choking got so bad that I took him in for a PEG tube. Off the subject, my mom has advanced MS and totally relied on him to care for her. His care for her obviously declined significantly over the months/years. Mike was diagnosed in January and they wanted him to be in a nursing facility immediately. We didn't want to do this. We wanted to try to do it ourselves but quickly realized we couldn't with both of them being so sick. He now acts like a 10 year old. He can't speak a word now. He is getting weaker but still walks fine. He dresses himself but all the muscle is gone from his thumbs. He has muscle spasms all over his body (he's had this for a good 9 months). He breaths fine except when lying down he breaths very fast and is very slow to get up from a lying down position. He was on the floor the other day and I asked him if he could get up and he could not. The weird thing is, he is still very strong. Does he simply not know how to get up anymore even though he has the strength to do so? If I ask him to write as many words as he can in a minute with words that start with the letter "S"...he can write 1-2 words in 60 seconds and most times regardless of what letter I choose he will write the same word twice. He will constantly stare at himself in the mirror and laugh. Sorry for rambling but to the point....he is going room to room stealing other patients food and drink and choking on it. What can I do? I can't ask the nurses to lock him in his room...or can/should I? They are understaffed to say the least. I'm sorry for rambling and being all over the place in my post. Life is a whirlwind. I also apologize for my ignorance.
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Old 06-09-2014, 11:19 AM #2 (permalink)
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Default Re: Suggestions?

Dear gracious lady! What a load you must carry. From your description of your father's symptoms, there may be something in addition to ALS or it may not be ALS at all. Whether any of us on the forum can answer questions for you, we are all here to support you with our kindest sympathy. Rant and ramble all you want--you're safe with us. You have probably already searched in person all the available resources locally, but keep looking. You can find a lot of information on line. Type any of the key words that describe your father's symptoms into your browser. Don't give up, there is insight there somewhere. And keep on that nursing home! Virtually every nursing home is understaffed, but I have found that the more often a patient's family visits, the better the care that patient receives. Ask your questions; wait politely, but pointedly for answers, and don't let them slough you off. If what they are telling you doesn't make sense, check it out and challenge them--but always be polite. I believe most nursing home staff do want to take good care of your relative, and anything you can offer to do to help them do that, they will likely appreciate. You can probably take board games or other things that will occupy your Dad senses. You can offer to feed him when meals are served. You can walk with him around the facility--take him outside as conditions permit. They will work with you as long as you are not adversarial. I am hoping for improvement in your Dad's care.
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Old 06-09-2014, 11:27 AM #3 (permalink)
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Thanks, Bucky. I will try to keep him more busy and ask the nurses for another care meeting and see what we can come up with!
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Old 06-09-2014, 12:58 PM #4 (permalink)
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I am so sorry that you have the double whammy of both parents with neurological diseases. Your father may have a dementia that can go along with bulbar onset ALS, which makes this process even more difficult. I am not sure what the nursing staff can do to stop his pilfering of food, aside from restraining him which is not optimal. Is there a time of day that this is worse? Maybe hiring a student to be with him, play cards, games etc during this time if it is after school, or a capable senior during the day. They would not be responsible for any care other than supervision. You will be in my prayers, and welcome to the forum.

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Old 06-09-2014, 08:36 PM #5 (permalink)
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Default Re: Suggestions?

What a difficult situation you are in! I wonder if his dementia is not ALS related--he was just doubly unlucky and is suffering from Alzheimers and then the ALS came along too. It is totally possible--WoW. No matter, you have to deal with what is going on and I feel for you. Is he in a medicare facility? is he in the memory care unit? There are different facilities and different levels of care. understaffed or not, they need to be responsible for him. their job is to care for him and you are paying for that. When my mom was in a nursing home with Alzheimers, she was not in the memory unit, and I thought she received deplorable care (it was a medicare facility). she was there only for a month and then came home to my dad. Every time we had a meeting with the staff, they said all the right things, but it did not translate to real care. If they can not guarantee his safety, then you should look at other facilities. money is always an issue for us all, and better homes cost more money. where is your mom? would at home, 24 hr care be a possibility? Maybe a live in care giver. then they could both be cared for at home together. I would think that perhaps the MDA would have a social worker who could sit down with you and discuss different options. I think they would be a good resource for you because you are dealing with both ALS and MS in the same family.
I am just making suggestions, as I do not know your situation. I feel badly for you, and hope that we can help you here. there are many knowledgeable people on this forum!

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Old 06-10-2014, 01:31 AM #6 (permalink)
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Default Re: Suggestions?

I'm so sorry to hear of these struggles, you have so much to deal with!

There are some very typical traits that you are describing there of FTD, rather than an Alzheimers type of dementia - poor decision making, problems with language, inappropriate behaviour.

If I remember rightly one of our CALS here had her PALS with FTD steal and apple and choke on it. It does happen.

FTD can present quite differently in each PALS - it depends on just what sections of the frontal lobe are wasting and how far they are wasting. Some drive their CALS to despair with spiteful behaviour, some are a true danger to themselves.

I'm not sure of the solution exactly, but it would seem that a care plan is needed to deal with this behaviour and if he is in a facility it is their responsibility to match the care to his needs.

My Chris also appeared to be very strong in some ways for a long time. It depends on which muscles have wasted. So he could hold a brush cutter and work with it for hours, but he couldn't pull the blankets up when he got cold. His arms had strength, but his hands didn't.
This could explain his difficulty in getting up.

I will never forget the stupid PT who suggested he do push ups to maintain strength. So she got him on the floor, he pushed his body up ok, then as he went to lower his body his muscles failed and he was flat on his face and had a lot of trouble getting up. I could have slapped her when he told me that evening!
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Old 06-10-2014, 09:43 AM #7 (permalink)
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I am so sorry for what you are going thru. Everyone on this forum will be here for you with not only insight but love as well.

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Old 06-17-2014, 07:44 PM #8 (permalink)
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Default Re: Suggestions?

It sounds like you have a clear diagnosis already of ALS/FTD. Sometimes that is half the battle. Your biggest question right now seems to be the food stealing. This is NOT uncommon. My son and I thought we had made the house safe for my husband. We had locks on all the cabinets and believed we had everything dangerous behind those locks. But one day he found an apple in the back of the refrigerator.. the sound of his choking woke me up. That apple set off the aspiration pneumonia that ulitmately cost him his life. I know asking to have him in a locked unit feels cruel... but it may well be in his best interest, and that of the other residents. This is definitly something to bring up at the care meeting. Especially since you are dealing with your mom at the same time, I would strongly suggest you keep a notebook of questions so that you can go into those meetings, as well as doctor meetings, prepared. Take care.
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