Husband has ALS with dementia

[DebbiN]

My husband of 42 years has had ALS with dementia now for 2 years. The dementia has been the hardest for me to deal with by far. I feel like I am losing my husband both physically and mentally. I feel very alone in this as I’ve not had any contact with anyone else who has both these diseases. I am his caregiver and I have real fears about what to expect for the future. I keep hearing how ALS and dementia affect everyone differently so I don’t know if I’ll be living like this for 2 years or 10. The dementia has progressed faster than the ALS. He can walk on his own but stooped over. He needs help with dressing, toilletting, cutting food. His oxygen levels have decreased at night so the Dr is going to talk about the next step for that. I guess I don’t have any specific questions right now. I just wanted to reach out to see if anyone is in my same situation.

 

[affected]

So sorry Deb - my husband was rapid progression bulbar onset with the FTD. Losing 'him' was by far the worst.

 

[lgelb]

Welcome, Debbi, sorry you find yourself here. There are definitely others here whose PALS is/was affected by ALS + dementia (we usually shorten to FTD because that is the most common kind with ALS). I am sure they will chime in.

I would certainly pursue BiPAP, because it could improve his wellbeing in several ways and probably the sooner you introduce it, the more likely that he can deal with it mentally and emotionally.

Just to double-check, does he have a Will, power of attorney and advance directive in place? And have you two discussed his wishes in regards to the end of life?

Best,
Laurie

 

[DebbiN]

Thank you Laurie. The answer to your questions is yes he does have a will, I have power of attorney and we do have an advance directive in place. We discussed end of life with his neurologist about 6 months ago. Due to the level of dementia, he does not want any invasive procedures. No ventilation and no feeding tube. I will start the BiPap after our clinic day next Monday. He doesn’t do well with anything “new” and it seems to increase his confusion. Even the walker which we’ve had for 6 months still confuses him. I am just so thankful that he has maintained his normal kind & loving disposition (so far). It certainly helps me to know there are others out there experiencing all this. I’ve felt very much alone.

 

[MVFinVA]

Debbi,
This sounds so much like my husband, Dave, who also had ALS/FTD. The ALS seemed to move from the head down. It moved from his head, to his arms and breathing, then swallowing, and hands. He could walk a little even at the end, but lost the ability to understand language at all. His disposition remained sweet until the end, although he was apathetic and lost empathy. But for him it may have been a blessing because he lost the ability to worry and understand what was happening to him. In his normal state he would have agonized over every little change.

I also worried about the BiPAP because pre-ALS he suffered from insomnia and I thought it would keep him from sleeping. But he slept all the way through the first night he had it and never complained about it. The full face mask would give him a sore on the bridge of his nose. We found the nasal pillows worked best for him.

By the time we suspected the ALS he also had the FTD, to the point that we never really got to discuss whether or not he wanted invasive procedures. Our family decided to go ahead with the feeding tube, but no ventilator. He definitely took an immediate downturn with the dementia after the anesthesia for the tube placement. I'm not sure it was the correct decision, but it did allow him to meet his first grandchildren, twin girls. By that point he was emotionless and could not understand, but I know it meant a lot to our daughter.

Dave lived two years almost to the day of when the neurologist first mentioned ALS as a possibility. Generally the ALS and FTD progress quicker together then if separate.

I went to the ALS Caregiver Support group ever month. I still go. But I know what you mean about feeling alone in it. The other CALS are wonderful, caring people. But there was no one there in this situation.

I agree, the FTD hurt far worse than the ALS.

Hugs,
Mary