cubcake

Hello Shelly, thanks for the note...little messages from afar let me know I am not alone on this rotten trip we are all taking...
Cals and Pals taking a couple of minutes to show they care somehow makes the journey a little easier. Thank you.
I wish you both the same, how you settling in?
Mair x

hey Shelly, nice to hear from you, likewise .......

Hi Shelly,
You got a lot on your plate, you must have the strength of ten..
Hope things settle down soon for you. Thinking of you both.
Mair x

cubcake - Wow , i do admire you for your strength, on top of your husbands disease you have to deal with that...God is watching ! thats all i can say, let him take the steering wheel. I had the worst epsiode of chocking with my mom last night, she had phlem and i can hear it, but she cant cough it up, and i almost called 911...its such a scary thing...she has some ftd also, so in reality she isnt aware of what this disease truly does, but i do and it kills me to see her like this, today i went to her pcp and turned in the do not resusitate letter...Wow, cant beleive this is happening to my mom...
anyways, lets keep in touch, we can share our stories....Keep the Faith !!! Amy

Hi Shelly,
Thinking of you. Hope your week goes well. Our youngest son just got back the other week from visiting my dad in Dallas. My dad's progression seems to be at a temporary standstill at the moment. It had been moving pretty quick when he was first diagnosed. Dad uses a walker in the house and usually someone walks behind him holding on to a gait belt. He uses a wheelchair outside the house. He uses a bi-pap just at night and tolerate it really well even though he's always had a tendency to be claustrophobic. Dad is still able to eat and maintain his weight though eating wears him out. He gets occupational therapy and it has really helped him with his speech and eating. Take care of yourself and drop me a note when you can. Kim

Hello cubcake,
my mom was diagnosed in sept.2011, she has a peg, and let me tell you its the best thing we did, ive been reading your posts and your husbands sound exactly like my mom, she is 73 and she is an angel....she too always smiles, she hasnt been able to speak either, and its just frustarting to understand what she is trying to say sometimes, when she does write on the tablet i got her , it makes no sense, she repeats the same word over and over again.....how is your husband doing ??? she is on the bipap, but she hates it and the most she has it on will be a couple of hours at a time....
this SUCKS !!!

Hi Shelly,
I want to thank you for letting me know about the gait belt with handles. I got one and it does help. I thinnk it is more comfortable for Dave too. I am curious to see how much difference it will make with the OT. We should be getting some visits beginning this week.
Thanks again,
Kris

Hi Shelley,
We are okay as can be I guess in the grand scheme of things. Clive's been a bit up and down with a throat infection, he got antibiotics for his chest now to ward off anything worse as the gp heard a few crackles this week. His moods are up and down and I have joined the ranks of the pill-poppers for my sanity
Is your new place easier? you in the same area?
We are still in our little house, luckily we have enough room for a bed/commode downstairs...
by the time they bring the stairlift it may be too late for him to use it (physically).
How you getting on with hospice?
We may be going in for a tube via RIG shortly, I'm scared for him. He gets infections easily.
Otherwise, first anniversary today, all is well after a dodgy start this morning
Hope you are both doing okay, Mair x

Oh Shelly, I can't tell you how much it helps just knowing you are there for me to bounce things off of and share information. We do have a gait belt. His PT gave it to us and never mentioned that there were better ones out there. I will look a.s.a.p. He wears it all the time accept in bed. It is basically just a belt that goes around his lower chest, just above his peg tube. Dave doesn't have enough strength in his legs to help at all getting up off the floor. We call 911 and ask for a "lift assist" when he falls. They (the fire dept.) show up in a short time and lift him and make sure he is OK before they leave. They are wonderful to him. Unfortunately I just can't lift him from the floor. It is getting so I can hardly lift him from sitting to standing, mostly because his legs don't want to hold him up anymore. Fred is about where Dave was last summer. I hope he continues to be able to do things like that for a long time. You take care, Kris

It appears I am long winded as well, it just feels good to communicate with someone in the same boat as us.

I'm not sure why the Dr. wasn't more interested in talking about it, but I think I will talk to the social worker from clinic. Maybe she can help in getting more info.

I'm glad you have made the descision that is what is best for him. I hope everything goes well and they help more than you even expect. Thank you for sharing. Please keep me posted.
Kris

Thank you so much Shelly for all the information. From what you say, Dave is a little further along in progression than Fred is. He is really struggling to get to a standing position (it's almost where I can't get him there.) Once standing he can walk short distances, (with a walker) but I am afraid he is going to fall every time now. I try to stay right next to him and have saved a couple of falls. If he really collapses, I won't be able to stop him, maybe just slow the fall. He is pretty much home bound because it is so hard to get in and out of the truck and until last week we had a loaner wheelchair that was too low for me to lift him out of. Now we have a new (used) loaner that sits higher but is too heavy for me to put in the back of our 4Runner. When we made the descision to get this chair, they told us they would provide us with a ramp so I could load it. Now they say they don't have one to loan us. (more on next post) Kris

Hi Shelly, I am surprised that your doctor has recommended hospice already. If you don't mind me asking, what made him come to that recommendation. I was under the impression that your husband was still moving around pretty well. The reason I ask is I have been wondering if it would be beneficial for Dave to go on hospice. We went to clinic last week and when I asked the Dr. about it, he was only concerned about the medication they might not want to give and Dave isn't on anything they would take away. I felt like he kinda brushed the thought aside. I am planning to call him to talk about it further. I'm just not sure what to say. I know this has to be tough for you too, so if you can share some of your thoughts, I would really appreciate it. If you feel it is too private, I understand. I don't want to pry.
Kris

ps - How was your trip?

Thanks for your prayers!!!
Love you
sharon

Thanks for the update Shelly! Suggestion... can you email Robyn or another nurse there? They might be able to help, or know when it would be ok to run the question by him. Good luck... take care.
Katie

Thank you so much!

We are planing to get married in October 14 at noon. He is very attached to me, and that has been a problem for his brother who wanted to be his guardian three months ago; and now my family just can't stand the fact that I am so dedicadet to him. I do have some friends who are very supportive to us. My daughter who just graduated as a nurse, she is very worry about me. I just hoping that he will keep remembering me and be affectionated. In my heart I know I am doing the right thing to do by caring so much for him, and God will provide whatever we need. So far we are doing acupunture every week and taking lost of suplements, and minerals; and eating healthy.