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Snowman78

Distinguished member
Joined
Dec 3, 2013
Messages
158
Reason
CALS
Diagnosis
12/2013
Country
US
State
SC
City
Sumter
My dad was actually diagnosed on 12/13/13 and given an educated guess of 4 months of life because of the rate of deteriation at the time. We are now 8 days past the 4 month mark, YAY! I feel like between me, mom the doctors, and home health/hospice we have done a pretty darn good job of taking care of him. His condition took another turn for the worse within the last week. I refer to it as taking another step down. What was his bad days is now his norm and the bad days are that much worse. While he can still move them around he has no real use of his arms anymore, anything he tries to do is an extreme struggle and wears him out quickly. His legs are also going away very quickly now. The newest problem is that he is having a lot of trouble on the potty and can't seem to get it out, which I am guessing means the muscles used for this are going as well. I work a full time job from 2pm-10:30pm and go home on my lunch break to take him to the bathroom in the evening just as I do in the morning before work. Everyday it seems the caregiving gets more and more difficult and intensive and I am scared we came on too strong from the begining and will wear down/out before this fight is over although we give it our best. Mom is not strong enough to maneuver him around, and I stay sore in my back, arms, and legs from lifting him and maneuvering him on and off the potty and in and out of the tub. I find myself tired all the time and at times very excitable and irritable. I know while I make it a point not to sometimes I just snap or say things out of shear frustration that must then apologize for and try to make right and when that happens I feel horrible. I try to never direct anything at him because it is not his fault. I am mad at this horrible disease not him. Most days I am fine, I guess it just builds up inside. Ex: I didn't really realize he was having that much trouble going as he has always(since this all started) been a little obsessed about his BM's and going. Yesterday I took him to potty 5 times which is really hard on me and him and he went a little each time but then demanded a full dose of Miralax before bed and something that simple just had me seeing red. I just couldn't understand why he would up his dose when he had gone so many times yesterday. I guess I just feel like I am losing control of my emotions when I am the glue that has to hold the whole thing together. Is this normal? How do I start/learn to cope better? Feeling overwhelmed and frustrated.:cry:
 
You are just tired, don't feel quilty, I can't imagine being in your shoes, at least I can still get around the house by myself. I get into small arguments with my caregiver (my son) it is just one bad day. Let it go, that is one thing I have learned about this disease, is dwelling on bad things is a waste of time.
 
Thanks Janie, I try so hard as does mom to help him and give the best care possible. I don't want to be upset/irritated with dad because it is not his fault he is this way. I try to be understanding and do all I can for him and keep it all in so as to not upset him but somedays I just can't keep it in and I get so frustrated, upset, and angry feeling but it is about the conditon not at him. It just makes me feel so bad when I have a caregiver meltdown.
 
If he's not already doing so, you might have him drink 3 doses of metamusil mixed with Apple juice. You can add a dose of the miralax daily if he so chooses. Helps me stay regular.
 
>Helps me stay regular.

I do the same with a gazpacho Sandy (wife) makes, the blends to a liquid. Usually 16 oz 3x per day
 
Thanks for the sugguestions ya'll! Praying for enough strength for my family and myself to finish the fight.
 
It's a hard job being a caregiver Snowman. When I'm tired I feel overwhelmed and that is normal. You will get the strength to go thru this journey even when you think you can't go another minute. You are not alone and we will be here for you every step of the way. When I feel like I'm starting to loose my cool, I go into another room and pray for strength, take a deep breath and it's better. Would a hoyer lift help? My pals is bedridden and has lost control over his bowels. He will not wear depends so he just goes on the chux in the bed. Not the best scenario but the only one that I can come up with. I'm glad you have help, that makes it a little easier. Hang in there.

Debbie
 
Snowman, at the beginning of our ALS journey, my PALS said one day that he thinks being a CALS has no rewards because no matter what you do, it is never going to get better. I said my goal is to keep him comfortable, and I wasn't looking for any other reward.
The feelings you describe are quite normal for us CALS. I have said so many things that I regretted later. Hang in there. You are a good son, helping your parents during a very difficult time for all of you.
 
I am so thankful you are there for your parents--the physical toll is high and I am sure your mom is not young. that being said, the emotional toll is also great. You should talk to your doctor about anti-depressants, many Cals are on them because this is just beyond difficult. There is no shame in them, and before you say I am not depressed know that anger is a sign of depression and the guilt that goes along with anger only makes it worse.

as far as the pooping issues. that is a common problem with Pals. I give my husband an enema every day...trying to go and go is just wasted energy for a pals. (as well as tough on the caregiver!) you want to keep him going as if it gets clogged up it is much worse than an enema! That can require a hospital visit and those are a nightmare...

Don't worry to much about that 4 month date that the docs gave. He will pass when it is his time and I don't think doctors should give random dates to pals. Try to enjoy the time left.

How is his breathing?
 
Barbie, I am not big on the whole giving dates and the doctor wasn't going to offer one but dad pressed him for an educated guess and so he finally gave him one. Thanks for the support everybody it sure is appreciated. Even though so many of us are going through it and I have some wonderful friends and family sometimes one can feel so alone. It is very hard to express the way I feel at times to someone who hasn't had to deal with something like this. The potty issues seemed to have settled down a little for now. He was so down on himself for calling me home earlier than normal because he "had" to go and then couldn't but I reassured him it was okay and sometimes it is hard to tell. Our Hospice CNA was on vacation last week and so I was handling all of the bathing and dressing which I got through but it was much harder on me than I expected with work and everything else. She will be back tomorrow, so that will help take a little extra load off. His breathing is pretty bad but has not been checked in quite a while. The last thing we were told was that he had about 50% lung function but that has probably been a year ago now. We start off the morning with Albuteral shortly after coming off of the bypap and then about .7ml or 14 mg of Morphine before starting his bath. He is on 4 liters of oxygen during the day and 3 at night. I hope ya'll are having a good Monday and may god bless ya'll and your pals.
 
Yep, it is really tough to work all day and then have to bath and toilet a pals. before we got our CNA I did all that and thought I was going to pass out! still have to toilet--a CNA can not give an enema in FL.

Do you give him Miralax? My husband also takes 1/2 dose daily at breakfast and it seems to help keep it softer and moving. you could time it so it helps when the CNA is there--especially if he is not getting enemas. anything to make it easier on him.

Sorry about everything going on with him, we will give you all the support we can and hold your hand thru this.
 
Please do not be so hard on yourself! The majority of us all have gone through and still do go through many of the things you have described, we are only human and are dealing with an extremely cruel disease. Unfortunately for us it is for someone very loved and precious to us. Sometimes you have to wonder who is the patient and who is the caregiver?
I think you are above and beyond! I am sure he is very proud to call you son.
Hugs
Linda
 
>It's a hard job being a caregiver

CALS are true heros!
 
Thanks so much for the support ya'll. He had his first real accident today, but we got through it. While using the urinal waiting on the CNA ( I normally take him whenever but it was an hour till the CNA came and we were trying to minimize trips) I guess his bowels decided to move. Fortunately he was able to stop it at just a minor accident and he was sitting on a pad. Got him to the potty and cleaned up and all was well except for his emmbarrasment. I made light of it and told him " see there, ya just can't trust a fart sometimes" and we laughed it off. He takes anywhere from 1/2 -1 dose of Miralax before bed and Colace in the morning and it works for the most part right now. He gets so discouraged on days he can't go but it normally works out the next day. The CNA was back from vacation today! Yay! My day normally starts at 8:00 am. Get him up out of bed and to the potty, then into the den for meds and breakfast, brief rest, then back to potty again, then bath, dress, wound care, and then to the den recliner for the day, help with lunch, eat lunch, and then I am off to work, then home at lunchbreak for potty patrol, then back to work, then do whatever I couldn't in the morning before crashing. Mom definitely has a full day to but I think we make a pretty good care team. Sorry to vent but it does help to get it out.
 
I am really starting to wonder when enough is enough though. First thing in the morning is 2 zanaflex, morphine, an occasional Tramadol (which is becoming more often) then 2 more zanaflex at lunch, 2 more zanaflex at dinner, a tylenol mixed in here or there as needed, baclofen if needed at bedtime and morphine. We also have Adavan waiting in the wings. I don't know how he is ever awake, I would be knocked out like someone hit me with a tranquilizer.
 
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