First fall

[starente15]

I'm freaking out. My dad fell to his knees getting out of bed this morning. I didn't see it nor did my mother. He said it's the angle he's on that caused it. I asked if he could swing his legs around and put them on the floor first and he said "if I can sit up." I had no idea that was an issue then my mother tells me that earlier this week she had to help him out of bed. They do t mention these small changes to the nurse and his response to her is always that he's doing well.

 

[affected]

hugs <3

Do you see a counsellor at all? I still see my one, it has been so helpful for me to have someone on the outside of everything to talk my own feelings through. Coming to a place of accepting what this disease is and what was going to happen is not an easy thing.

 

[MaxEidswick]

>I had no idea that was an issue then my mother tells me that earlier this week she had to help him out of bed. They do t mention these small changes to the nurse and his response to her is always that he's doing well.

tell them. This is important info for CALS! does he go to a clinic?

 

[davbo49]

it's not so easy when you can't push your self up when the arms are gone. i have to sleep in a chair any more. i fell a few times trying to use the bed. if he is walking still. tell him to stop that. i tried that yesterday it seem like my head hit first. not good. still have headache over it. it's lucky i have a hard head well that's what jane says

 

[Vincent]

My family went to New Orleans over Christmas. Staying in the French Quarter we went most places on foot. What a difference between Louisiana and Canada. You see up here we have all sorts of red tape and regulations regarding everything from the amount of insulation in your roof, to the height of a curb, wheelchair ramps, acceptable rise and run on stairs, etc. It sounds sort of nitpicky but it works. When you go for a walk, there's no surprises. Unlike New Orleans where a 10 inch curb is not unusual, not common, but they throw one in every so often to see if you're paying attention, This was the cause of a near faceplant I had coming up off a road while there. I fortunately still have arm strength and was able to stop short of injury. Without working arms I'd have lost teeth. I was a little shaken up but able to continue.

I guess what I was wondering was is it the fall that speeds things up or is it the resultant injury that does it?

Vincent

 

[starente15]

I see a counselor and go to a support group. We have a clinic visit on the 23rd. Unfortunately I'm leaving tomorrow until the 22nd. I'm scared to think about what may go on when I'm gone

 

[Barbie]

Star, many Pals are in denial--my husband would always say fine to any doctor or nurse even though we were there for specific problems. (made me crazy too!) I started to just speak up--say "honey, what about .......? tell the nurse about that" and then that would spur a discussion on the issue. my current doc asks my husband and then asks me if I have anything to add. I like that, because he is respecting my husband but knows that the caregiver may have a different opinion on issues. Your mom probably needs to do that. she may feel that she has to protect his pride but in reality she is in denial too. a fall like the one you describe is a sure sign that they need to re-evaluate how he is going to transfer and get a plan in place--before mom has to call the fire department to pick him up off the floor. if he were to fall in the bathroom or on the driveway, he could split his head open and end up at the hospital (or worse). All you can do is tell them this, make suggestions and let them make their own decisions. it is hard, but dad has to be in charge of his own body. But, of course, you may try to get mom to be your informant on the sly so you can keep up with what is really going on and also make suggestions she can implement.

 

[affected]

I guess what I was wondering was is it the fall that speeds things up or is it the resultant injury that does it?

Vincent it's the injury. Well it's this way - as the nerve supplying the muscle dies, the muscle begins to waste because it can't rebuild itself. All parts of your body are constantly wearing out and being rebuilt. When an injury happens, the muscle cannot do any repairs (or very little depending on how much nerve impulse is left). So if you injure a muscle, it's not going to get better.

A good example was when Chris was still walking unaided, and was falling often but escaping serious injury and so not heeding that he was heading for a big one, his 'good' arm and hand was the right one. He fell, and with no arm strength as you all know, simply went down, sideways and landed on the right shoulder on the pavers on the veranda. He ruptured the major tendon in the shoulder. He got back about a quarter of the use of it he had previously had over the next weeks. The shoulder became seriously frozen and he never was rid of the pain that resulted.

So he lost a lot of quality of life through losing the better arm/hand so much faster and the pain on top. He did stop getting cramps in that arm, as it only ever cramped if he reached forward a touch too far, and now he could never attempt to reach forward again.

I'm sorry for the graphic description that may be, but I just won't sugar coat this.

I lived for about 8 months is total fear that he would fall and split his head open bleeding out on the floor in front of me.
That was the next serious fall. The split head, black eye, broken ribs, damage to the left shoulder and hip were indeed the beginning of the end of any mobility and much more pain for the 5 months or so longer he lived.

I don't ever think he may have lived longer had he not insisted on being mobile without aids, I only ever think he could have had more quality if he had just used a walker. He insisted he wanted a walker, it was provided promptly. When it arrived he told me to put it away as he no intention on using it.

It wasn't until he literally could not walk even a step without it that he finally started using it, but by then he was nearly wheelchair bound.

He would also tell all health professionals how well he was doing, how everything was fine, and put across this aura of such an amazing person who was gracefully living with ALS. The reality was very different and if I spoke reality to a health professional he would be furious and I would pay for days. He even told me that these were his appointments and I was only there to interpret for him. If I wanted to say anything of my own then I could make my own appointments.

So we do at times have our hands tied, no matter how much we love our PALS.

Star, I know being away for a couple of weeks now is going to be so very difficult for you as you are going to worry constantly. I agree that you may need to have some frank discussions with your mum before you go. I have no idea how much she understands the situation with ALS or how much denial she is also in. My thoughts are with your family.

 

[Nuts]

Argh...parents who won't tell when things are going wrong...I feel your pain, and it sooo much worse with this disease. Star, you've been given some great advice here, let me just add that you can only do what you can do. If you must be gone, then there is nothing you can do during that time. One thing I've learned (LOL...over and over and probably will again...) is that I can't control what I can't control, so there's no point in making myself sick worrying about it. I just plan on picking up the pieces afterward. Try to convince your folks that they need to get ahead of this disease, not be behind it, but if you can't, then your dad is going to fall again, and you can't stop that from happening. Do your best, and then give yourself a break.

 

[Nikki J]

You could call the palliative care nurse and tell him or her they are not being told the whole story. The nurse can not tell you anything if you are not on HIPPA but they are allowed to listen. It sounds like the nurse needs to ask specific questions rather than a vague how is it going. If the nurse does not step up to the plate and do a more thorough assessment after a heads up they are not doing their job but if 2 seemingly competent people say they are fine I can understand their not digging further

 

[lgelb]

Davbo, why are you sleeping in a chair? Don't you have a hospital bed? Your clinic can help you get one. Also see below.

Star, if your dad can still transfer w/ help, might try putting a slip sheet w/ handles under his top sheet, so you/your mom can pivot him in the morning to sit up. But it does sound like his limb weakness is progressing, so you might also want to start looking into your local loan closet/elsewhere for a Hoyer lift.

 

[affected]

Nikki it's really hard when they turn on a winning smile and lie through their teeth at the health professionals.

The only time I saw that one did not believe him at face value was when he continued losing weight after the peg no matter what I did. The dietician (head of the department who didn't usually do patient care but Chris had them all so convinced that everything was their fault he had stepped in) asked him plainly - what is your barrier to trying to gain weight? Chris looked him in the eye and spoke, and of course I had to interpret as no one else could understand him. So I had to then say - he said it's because I won't give him enough feeds. (imagine how I felt?)

The dietician looked at Chris, then looked at me, then began to roll about laughing ... so did I and well it was pretty funny.

 

[Nikki J]

Of course they can lie but less likely both he and his wife will lie to specific questions. How are you is easy to say fine but how do you get out bed in the morning? Is it ever difficult? Is there anything that would make it easier? Is a lot more likely to get specifics. This is med school/ nursing school 101. All histories should be taken that way the problem is every health care worked is overtired overstressed and overworked so they need a nudge
If the parents then still do not disclose that is the way it is but don't close the door to Star giving it a try

 

[affected]

Gosh Nikki, I wasn't trying to close any door to Star giving anything a try! I was just trying to show her that I understand how hard it can be sometimes.

 

[davbo49]

Davbo, why are you sleeping in a chair? Don't you have a hospital bed? Your clinic can help you get one. Also see below.

Star, if your dad can still transfer w/ help, might try putting a slip sheet w/ handles under his top sheet, so you/your mom can pivot him in the morning to sit up. But it does sound like his limb weakness is progressing, so you might also want to start looking into your local loan closet/elsewhere for a Hoyer lift.

i wish they would give me one. we tried to get one they wouldn't go for it. they said they can't do it till the end wth is that. i don't think my als team is there for me really. they are just there.