How we all deal with Stress

[Chase_Corin]

Dad was diagnosed in November of 2010, in the past week his breathing has become more laboured, his bones are starting to hurt just for the sake of hurting. His speaking is just about the level of a whisper and even that is garbled. He never uses his speach assist device.

Nobody has come to train my mom on how to use the suction device and dad rejects any help with his eating. He won't let us puree food, crush pills or anything that might make things easier. He eats toast cut into small bits with jam or apple sauce and that is basically what I have seen him eat all weeked, Oh and a bit of sausage.

Dad has been against having the feeding tube since the begining and I can respect that but I don't know if I can sit around and watch him starve or dehydrate to death. I am almost certain he is dehydrated right now (and yes we are calling his doctor about it tomorow) his mouth is sticky, his kidneys are acheing and I believe he may have a urinary tract infection if not Kidney stones.

My dad has always been stuborn but until you have lived with him you would never understand how he can precisely time things. You will be in the room with him for an hour, the moment you walk into another room he starts talking. The problem is that we can't hear him or understand well enough without a line of sight so we are kinda lipreading kinda understanding jestures. The other thing is that he still talks to the television (this is not unusual) So once we hear him mom and are jumping up seeing what he needs.

We are exhausted.

I work part-time and normally stay up half the night just in case dad needs anything. I wake mom up for the other half then when I get home from work she goes to sleep and then she lets me sleep a few hours after that. It seems like we are riding a ferris wheel.

As a result we have all delt with things differently

I have lost almost 100 lbs. (not that I didn't need to loose it) since this time last year just from the stress or so I think. I havn't been exerciseing, or eating overly healthy.

My mom on the other hand has been gaining weight and is unhappy with herself but it gives her somthing to do other than worry I guess.

My brother has moved out, he found the girl of his dreams, and moved into her house now we see him rarely and he is able to escape the stress.

I have friends that try to understand, try to grasp what we go though but a lot of them haven't seen dad for years because dad has become a recluse. He dosn't like people coming over to the house. So the few friends who have seen him are compleetly shocked. He has lost so much weight, he's bent over like a little old man, and he just dosn't have the I don't know what you would call it, energy for life, or somthing that made him who he was. We have always been a family that laughed together but these days the laughs are a little bit too few and far between. Like a cloud is overhanging us.

 

[brooksea]

I'm very sorry and I do understand your frustration. I wish I could offer some advice. All I can say is hang in there and thank you for helping your mom and dad.

 

[themommy]

Oh honey, get some help. This is all so very hard. Especially on the young. (Its hard enough for those of us who have years of schooling in the school of hard knocks!) But it is especially difficult on younger people who are watching this happen to their parents. Try to get some relief. You are NO USE to your family if you are utterly exhausted all the time. Take a weekend trip. Hospice will send a team in to help you all with caring for your dad while you are gone. Seriously. Get help. There is a time when you are GOING TO BE NEEDED..Don't wear yourselves out before then. Sending lots of hugs your way.
Amy

 

[cervus]

It is so overwhelming. You are amazing for providing so much care to your mum and dad and also for being responsible on your brother's behalf. You will always be so glad you have stepped up to the plate the way you have. You're a good person! Take care Chase.

 

[MLOx]

I think we all deal with stress differently, self medication (food, alcohol, sleep) and so on.....I wonder if your dad's refusal of a PEG is his way of saying he doesn't want to prolong things? I just put a post about a book that I have found really great "Dying Well" --and since getting a ALS diagnosis is a death sentence I think PALS are thinking about it--and they all have their own reactions, anger, denial, grief....and as for you getting support I have found it's so difficult to talk to friends, they say nicely 'how's your mom doing" and if I responded with truth every time--then every time things are worse because the disease is progressive.....I think i have been stressed about deciding how and when to talk to my mom about what she wants in the end (we have her five wishes but I mean at a deeper level--and if she is a peace with dying or is there still something for her to do...reading this book I realized that she would probably be grateful to have a talk about it, she probably isn't bringing it up because she doesn't want to hurt us or make us worry I haven't brought it up because I didn't want her to think she was close to death, but now i realize the best thing to do is to finalize the conversations and that will bring some peace...when you describe your dad i just wonder if he is choosing not to prolong things? I'm very sorry for you to feel alone, and I think we on this forum are the few who get it. Remember to care for yourself and give yourself a break when you can. Take care

 

[panguinjen]

Chase,
I'm so sorry! Please let us know what the doctor says... Make sure the doctor knows you and your mom are exhausted as well. Does your dad go to clinic days? This is a time to bring some professionals in to help your dad clarify some of his reasons for his choices. Also call the company that dropped off the suction machine and tell them you need se training now... Ask for a supervisor if necessary.

Jen

 

[HelenL]

I'm so sorry about your father's stubbornness causing him and you all more issues... how old is your Dad? Sounds alot like mine was, but I'm sure he's much younger. If he doesn't accept help, does he realize he's going to end up in the hospital?

Can you have hospice come in and help out? Sounds like he's at a point where he needs it, and it will enable your family to "enjoy" some time with him rather than sitting up watching him breath... they can help with decisions I think as well.

Definitely get someone from the company to teach you how to use their machine. And also call the ALSA to have a social worker come out and help you maneuver through the next stages.

Hang in there, but remember you're not a superhero, call in some folks to help out!

 

[notme]

Just one caution on Hospice--if they are called in--be sure you have all durable medical equipment on hand before--wheelchair, etc. Can the ALSA offer respite care for you and your mom?

I'm guessing he didn't qualify for any veterans assistance?

Wish there was more to offer.