Father ALS with FTD Caregiving dilemma

[Mageejj]

Hello,
I am new to the forum. My father was diagnosed with ALS with FTD on January 3,2013.
At the time he was walking, talking, still driving, and working. Since then he has declined at an amazing rate. My mother and I have been able to handle the caregiving until this last week. He is totally incontinent now, soiling floors, beds, chairs, etc, continuously. He has been unable to get out of his bed or chairs. He is having lots of difficulty while eating and is eating very little. We chose to forgoe the PEG according to his wishes. He has a ventilator but refuses to keep it on. Within the last few days he's become unable to dress, bathe, and feed himself. He is cognitively and physically unable to complete day to day tasks at home and is becoming increasingly dangerous to himself. He is resistant to much of our help in these matters and often becomes violent. He is so weak physically it is really of no threat to us. He spends most of his day staring at the TV. He is essentially mute at this point. He might get one word out a day. He has a communication device but has become mentally unable to use it. Same goes for the electric wheelchair. He was totally incapable of running it.
At this point we cannot handle the 24 care he needs on our own. We're not sure if home health care will be beneficial or if we need to look into other options. My mother is totally burnt out at this point and is really having difficulties handling his constant need for care. Does anyone have any advice or recommendations on what we can do?

 

[Katie C]

Talk to your neurologist about hospice. Levels of assistance are dependent on an intake interview and can range from help a couple times a week to 24/7 coverage. Your other option is nursing home care, which sounds like may be where you are headed but it's hard to tell. I'd say talk to the neurologist ASAP and go from there. Also be looking into what your insurance will cover regarding both in home and facility care. I know this part is rough on all... hang in there!

 

[Cereus]

Dear Magee,
I second Katie's advice. We both had husbands with ALS and FTD. I wish I had called hospice sooner. They were a joy, giving him the help he needed and giving me support so I didn't feel all alone in his care.
My husband too was unable to use his speech device, used the electric wheelchair once and almost landed in the pool! He couldn't figure out the power recliner and the TV was his best bet too. His eating became very difficult and I wish I had stopped trying so hard honestly. We also chose no peg.
Every time hospice came, a nurse and a social worker, he brightened a little. We laughed and had fun - it was not the downer I had imagined.
Your mom and dad are lucky to have you in there helping. Sending you a big hug and a little support from afar.
Paula

 

[Mageejj]

Thank you for your responses. This is all so overwhelming, as you well know. We're waiting on a call back from the neurologist. His respiratory therapist visited yesterday and she recommends we place him in a care facility. She said their house is not at all equipped for his future needs. I'm hoping we can continue to care for him in home for a while longer with some help. We just never know what to expect week to week because he is changing so rapidly. It's so hard to tell what he is thinking or feeling with the loss of communication. He does light up when someone new visits or when I bring him candy Smiles are rare anymore so I'm happy to bring candy. Is the rapid rate of decline he's experiencing normal with FTD/ALS combination? Many of our medical staff seems to be surprised each time they see him.

 

[Katie C]

Rapid decline is not uncommon in ALS/FTD combo... though not always a given, either. Don't let the respiratory therapist frighten you into making decisions you're not ready to make. Looking into all your options is a good first step. I also found an adullt daycare in our area that specialized in dementia... Glen absolutely loved it and it gave me a few hours off a few days a week. It was wonderful!

 

[hangingon1]

Hospice was a lifesaver for me when my wife became totally paralyzed. I hope he has good insurance, she had medicare. They came daily to clean and all of her diapers, and prescriptions and checkups were covered. She did not last long, 9 months, after she became bedridden. I suggest Hospice for him now.

 

[DocRobyn]

How crazy is this! I'm Mageejj's sister, lol. I am actually at the house right now helping our dad today. I concur with everything my sister has said. One thing I would add that I would be interested to see if anyone else has any input or advice about is that it has become nearly impossible to determine if our dad understands what we are saying, asking, etc. This morning alone I have noted moments when I am sure he understands (ex. he was slouched in his chair and I told him if he let me help him up we could readjust him in the chair. I helped him up and he did not attempt to move forward, but stepped back and sat back down.) However there are many other moments when we simply get blank stares and nothing else. This inconsistency makes it really difficult to determine how to proceed about anything. If he is still aware of what is going on but simply trapped in a body that doesn't work, then I feel like we need to keep trying to manage, however if the dementia is really dominating then maybe that is not our best option for his welfare. Has anyone experienced this dilemma? Also, does anyone have any advice about proceeding to explore care facilities hoping that medicare will cover a bulk of the costs? Since he has ALS and dementia, we are not sure about which disease would be considered primary and therefore the determining factor in deciding care. We are at a loss and any advice is greatly appreciated.

 

[Nikki J]

Medicare does not cover long term care. If someone is receiving rehab services they will cover a certain number of days after a 3 day hospital admission. The number of days are not automatic as there are certain markers the patient needs to be re certified. Medicaid will pay for long term care is the assets are low enough. There is a provision for the spouse to keep the house and a certain amount of assets.
My mom had a primary dementia diagnosis prior to the ALS symptoms. she was virtually immobile and mute for her last 2 years. She was at home with caregivers. We always talked to her as if she understood which I believe she mostly did and just did what we thought best to make her comfortable and content as she could not tell us you do what you can with what you have. It is incredibly hard I am so sorrt

 

[Katie C]

I wish I had a happier answer but the lack of response is part of the FTD. I know that at times it feels like he's just blowing you off, and could respond if he wanted to. At other times, it feels like he really can't. And honestly, there's no way to tell. Part of it comes from the loss of empathy... usually at some point we will answer a person even if we don't want to because something in us says "ok, I really need to say SOMEthing..." The person with FTD has lost those internal voices and does not feel any compulsion to respond. As others have said, all you can do is your best, make your best guess at what she would want.

 

[Mageejj]

We had a few more changes over the last week. He has become totally unable to get out of bed and has slipped out of his wheelchair and lift chair several times. Before we have been able to get him to crawl to the bed or couch and then we can help him up. Now he can't get the strength to get up. We are unable to lift him on our own. His neurologist is writing an order for home health and our local MDA said they can get us a lift from their loaner closet. Does anyone have experience with a lift? I know nothing about them or what type we might need.
Also, several of you have recommended hospice. When I called about it they said he needed to have swallowing and respiratory difficulties to qualify. Since he is still trying to eat on his own and only has a ventilator at night they said he wouldn't qualify. Is this what everyone else has dealt with?

 

[Barbie]

Call a different Hospice or call them back and insist on an eval. Don't take no for an answer especially if they haven't seen him in person.

is there any way you can afford a part time or full time caregiver? he is changing very fast, I know this is so hard on all of you.

I would be concerned that if you put him in a care center, he would not get the care he needs as his need s are changing rapidly. Medicare doesn't cover long term nursing care unfortunately, only only short term care.

 

[Katie C]

Glen could still walk and eat when he went on hospice care. But he was changing rapidly. And FTD is rare enough that many care providers don't understand the strain it puts on the caregivers and family. It depends on how your neuro writes the care order also. I actually had a physical therapist, after hearing that Glen could walk and could eat pureed foods, ask why we were calling hospice! I talked to Glen's case nurse about that phone call and the pt was removed from the hospice program! Let your doctor know what you've run into, call the hospice provider back and ask for a supervisor, and contact another hospice provider. Your whole family deserves respect and proper care!

 

[KrisS]

I suggest you ask the MDA or ALS association loan closet if they have what is called an easypivot patient lift. We borrowed one from the ALS association and we find it is the method we like to use to get him up and move him back and forth from the bedroom to the livingroom. We also use it to get him out of bed into the shower chair or wheelchair. My husband says he would rather use it over the hoyer and I definately find it much easier to use. If you want to see how it works, google it, there are great videos on how to use it. No one will take care of him with the love you have for him, just keep doing your best to learn what is needed. Once you learn how to handle things, they aren't so scarry anymore. Hang in there!

 

[DocRobyn]

Hi all,

Mageejj's sister here. I am at home with my mom and dad right now and we put him in bed last night around 10:00pm and it is now 10:30am and we can't get him to get up. He looks at us when we go into his room and seems to listen when we talk but then he turns back away from us and pulls the covers back over him. Last night he seemed very zapped and out of it when we put him into bed and for a while before that. He has had some sinus drainage and coughing the last week or so. Last night we watched on the video monitor after we put him into bed and he tossed and turned until nearly 1:30am. We went in and asked if he was in pain or uncomfortable but he was so out of it that he didn't respond. Just stared. Any advice? Anyone experienced something similar? To give a little background, in the past 3-4 days we have seen instances where he suddenly had the strength and drive to get out of the chair by himself and even out of bed one night. We are at a loss and worried that something is wrong. Any insight is appreciated.

 

[DocRobyn]

Update: he is up and awake now, but moving very slowly today. Maybe he was just really exhausted. He is still acting as if he doesn't feel well (I know, duh, he has ALS, of course he doesn't feel well!) but I mean beyond the norm. I guess we will just watch and see what comes of the day.