CALS Roll Call Continued

[Mary2]

Wow Tillie, I reviewed your website. You really went through a lot with Chris. The website is a great source of information.

 

[Tomswife]

Build up of co2. Sounds like the abg blood test is important.

 

[Mary2]

I am taking the 5th on this one....I think the pulmonologist could have done 1 or 2 of these tests for himself right in his office. And if the results were off ordered you the bi-pap right then and there and saved you from doing more running around......oops! I guess I didn't take the 5th!

 

[MJT]

I hope your sweet Tom will return once his breathing is better. A head's-up; Mary and I had to get several different masks before finding suitable ones for our PALS. Let us know if you need suggestions. We are thinking of you.

 

[Mary2]

I go the week ends without any help, but am so tired I might have to change this. We first had help in the house in July 2020 and then stopped it in October 2020 because of the Covid risk and began again April 2021. So 25 months of people in the house. I hate it when they are in my kitchen...and I am tired of being on a schedule. So I am of 2 minds of bringing in some week end help. He has one med he is suppose to receive every 4 hours and another every 6 hours. I don't achieve this. I am too tired. I am too tired to exercise now.

 

[affected]

sounds like it is time to introduce weekend help, even if you started with one day.

 

[Mary2]

Tom's wife..I wanted to ask you if the wheel chair you have on order has the bracket at the back of the wheel chair to hold the bi-pap. National Seating and Mobility had to make a special trip out to our house to put the bracket on. So what we do is at night PALS uses the humidifier attached to the bipap, but during the day he does not and he uses a bipap that is on the back of his wheelchair. He seems to tolerate this okay.

Also we made a pitch to the RT that there was only 6 hours of battery life on the trilogy and that we did not have a generator if the lights went out. RT managed to get us a second trilogy for which we are grateful. So one stays by his bedside and one is on the back of the wheelchair.

 

[lgelb]

Just a reminder that everyone's power company should have a form you can fill out and have your doc sign, with all the essential equipment on power: hospital bed, power chair, patient lift, BiPAP(s), etc. This is to hopefully move you to the front of the line should power fail.

Medicare should support two battery-powered BiPAPs (Astral/Trilogy) on request, for the same reason. Another option is to have an extra external charged battery at all times.

 

[Tomswife]

We lost power last week for 2 hours. The bed was at the correct angle so it was not critical. O keep the hoyer charged. But now we have an air mattress. I kept the foam mattress just in case we lose power. I will have to lift Tom and switch mattresses and put him back.
If not storm related, power ourtages are a few hours. Storm outages can be days.
I will look into electric co. Form re outages.

 

[Tomswife]

Mary. I dont remember if we have a bipap holder on PWC. But they ask for most functions to see if insurance will pay.

 

[Tomswife]

I am becoming...I dont know. I dont have words for how lost I feel. Tom does not relate to me as his wife and friend of 47 years. I am just the person who does things for him. He has a board he writes on. Urinal. Bedpan. Shirt is bunched. Back hurts. I have great compassion for him. My heart breaks for him. I cannot imagine what he is going through.
I dont want a tshirt that says "I am ALS". I want one that says "I hate ALS". ALS can go to H.

Tom has always been introspective. Since the dx he has not learned anything about ALS. I have done all the research, planning, coordinating, health care decisions, etc etc. I had to figure out what equipment we would need, and now it is unused. No longer needed. The disease has moved on and left all of these contraptions in its destructive wake. I sold two cars to have one car that he could get in and out of. But he now rides in the wheelchair van.
I would move mountains for him, if I could. And, I just want to be his wife again. I wish he would write something kind to me on the stupid board. I hate the board now. I used to hate the lift. But the lift and I have reconciled to our roles. Now i want to throw the board across the room. But i give it the board to him. Read it. Bedpan.

 

[Mary2]

Kathy, you have moved mountains. You and Tom have had to adjust to much decline very quickly. Tom loves you and treasures you. There is a physiological reason why he has disconnected. C02 build up or deep clinical depression.

Women friends I know with husbands in their 70s have also had to deal with some of this from their husbands. The lack of interest in their healthcare or refusal to make lifestyle changes or to follow through with treatment. Some men once they don't have their identity as defined from their work shut down.

But in Tom's case it is probably Co2 buildup and shock/depression at the rate of decline.

We likewise have gone through mountains of equipment and supplies. Soon you will have respiratory equipment in the house. Filters and masks and tubing. And you will have to keep up with those supplies. And having distilled water to fill the humidifier chamber. It's the next stage in the ALS progression.

Tom loves you! It is ALS that is the monster! ALS that is the taker of emotion!

 

[affected]

I'm so sorry that ALS has taken so much.
It was the same for me and is for many CALS. The relationship can quickly be lost and we are not only the caregiver, but the thankless one.

The emotional side of things was by far the worst for me.
They don't even realise it has happened.

 

[lgelb]

Besides possible CO2 buildup and depression about progression, ALS can result in a loss of empathy and/or apathy and/or decision-making in its own right. It is one of many cognitive/emotional changes that can occur. We call some of them FTD as an umbrella term, but there are others.

 

[Tomswife]

The PCP has ordered Lexapro. I talked to the neurologist today and he is concerned about oxygen and co2. I moved up the hospital pulmonary to weds (not Friday). I am supposed to beg the pulmonary dept to rush the report so pulmonologist can decide action thursday.

I made or received 23 phone calls today organizing Toms care - neurologist, pulmonologist, internist, hospital, wheelchair van, health care aides, church.
I never expected him to leave me in this way. He is here, but not here.