My Dad

[Gardening with Rabbits]

I am sorry to hear. I worry about the radiation later on down the line for DH. Medications can make memory and mood worse. DH lets me take care of the medication and he takes all of it with no trouble. He actually wants medicine and has no fear of side effects, which I am the one with that problem. DH had his treatment fail and he started a new one. So far nothing major with side effects. He will have MRI/CT scan July 11 to see if this is working. I have a lot of fear about it. The garden is my therapy and right now DH is busy working on the roof that he seems to never be able to stop it from leaking. That sounds amazing he can do that and the doctor was happy to see he is doing so well, but he works until exhaustion and does not take long for that. At least he is happy being busy. He could not do this alone or live alone, but he is that type of a person anyway. Your dad sounds very independent. You have to take care of yourself. I have finally got myself to that point where I am pretty happy and dealing with all this and thinking of DD and DS. Good luck with the MRI on Friday. I know I dread them anymore instead of looking forward to seeing results. He will have a good scan and then bad one.

 

[Nyboy]

Journey he might have gotten used to all the attention and visitors he got in being of his illness. Find the money somewhere to hire help. My friend Kristine is a home nurse, half the time her clients don't need her for medical reasons but for companionship.Older people get lonely quicker then young people. I am fighting my sister now about my fathers choice to stop going to Dr and stop taking his meds. He is very clear headed so I respect his decision, my sister does not.

 

[thistlebloom]

So sorry Amanda. Will his insurance cover some daily medical help?
I hope you get some decompression time in your garden. We miss you here too.
Praying for you and the decisions you have to make.

 

[Smart Red]

Hugs Prayers Caring thoughts

I know it's not an easy journey you have been given. Especially since there is no chance of a positive outcome to look forward to. Perhaps little bounces up from time to time, but mostly a steady progression down.

Love him. Treasure what time you have with him. Consider your battles carefully. Most things are not worth the stress of a battle and there is no winning -- only capitulation -- anyway. Remember that getting old is the only alternative to death so we may all be in Dad's place someday.

 

[baymule]

Haven't had much time to visit on here or much to show for myself anyway.

You have a LOT to show for yourself. You have shown a loving, caring, kind daughter trying her best to care for her sick father. And doing all that while juggling children, husband, and the duties of trying to keep it all together. While we miss you on here, we know you are up to your neck in alligators while trying to drain the swamp. We got'cher back.

 

[ninnymary]

This is so sad to hear. Wish I was there to help you with your garden and house cleaning. This is something I've been wanting to do. To be able to help m friends out with this sort of thing. I don't really know what to say to make you feel better.

Mary

 

[Gardening with Rabbits]

When he goes to the doctor, does he listen and seem interested and let them draw blood and treat him without complaint? The reason I ask is, years ago, my elderly aunt came to live with us and the first night, I had medicine I had to give her and she hit me and she did not want me taking care of her. She had enough money and insurance that I hired a friend of mine that did in house care. She bathed her, dressed her, gave her medicine without a problem.

 

[journey11]

I am sorry to hear. I worry about the radiation later on down the line for DH. Medications can make memory and mood worse. DH lets me take care of the medication and he takes all of it with no trouble. He actually wants medicine and has no fear of side effects, which I am the one with that problem. DH had his treatment fail and he started a new one. So far nothing major with side effects. He will have MRI/CT scan July 11 to see if this is working. I have a lot of fear about it. The garden is my therapy and right now DH is busy working on the roof that he seems to never be able to stop it from leaking. That sounds amazing he can do that and the doctor was happy to see he is doing so well, but he works until exhaustion and does not take long for that. At least he is happy being busy. He could not do this alone or live alone, but he is that type of a person anyway. Your dad sounds very independent. You have to take care of yourself. I have finally got myself to that point where I am pretty happy and dealing with all this and thinking of DD and DS. Good luck with the MRI on Friday. I know I dread them anymore instead of looking forward to seeing results. He will have a good scan and then bad one.

I am sorry to hear your husband's immunotherapy quit working. I have heard that the cells can mutate into different variations and what worked may stop working. Is he on to Avastin now or done it already? From what I gather with the GBM, if the standard protocol of Temodar and radiation fail, they usually try that next. I have heard that the polio virus treatment is going into Phase 2 now...

My dad has been up on the roof numerous times too! He has a 2-story house! It makes us all cringe and his neighbors too, but his balance is pretty good actually, and as long as he is happy and keeping busy, I've not said anything to him about it. He has been on a mission to do several repairs around his home now that he has time to do them and I think sitting there just staring at things bugs him terribly. He has to do something about it. I think it's good for him though to keep on keeping on. Good exercise as well. The doctor told him to eat well and keep his muscle mass up with exercise. He won't lift weights or anything, but he does love to work.

So sorry Amanda. Will his insurance cover some daily medical help?
I hope you get some decompression time in your garden. We miss you here too.
Praying for you and the decisions you have to make.

It will cover up to 100 home health visits (we were supposed to have them post-op, but somehow the hospital thought it wasn't covered...didn't order it, not sure what happened.) And he can get unlimited number of days in a skilled nursing facility. Both pay at 80%, but right now we've hit the catastrophic out-of-pocket maximum for the year, so everything pays 100% until the end of the year. What would be nice would be to get someone in a few hours of day, to cook and do light housekeeping, and for company. I don't think he'll abide it though, not while he's still feeling so strong and capable. He has lived alone for so long, I think they will get on his nerves (we did too, lol) and I'd hate to do that to someone...I'd have to pay them well, ha. It has been such a blessing that he has such good insurance. His bills have been quite manageable!

This is so sad to hear. Wish I was there to help you with your garden and house cleaning. This is something I've been wanting to do. To be able to help m friends out with this sort of thing. I don't really know what to say to make you feel better.

Mary

Thanks, Mary. This event (and Savannah's heart problem at birth, and my sister losing her baby to a birth defect) have made me so much more aware of how people struggle. I try to keep my eyes open for opportunities to pay it forward too.

When he goes to the doctor, does he listen and seem interested and let them draw blood and treat him without complaint? The reason I ask is, years ago, my elderly aunt came to live with us and the first night, I had medicine I had to give her and she hit me and she did not want me taking care of her. She had enough money and insurance that I hired a friend of mine that did in house care. She bathed her, dressed her, gave her medicine without a problem.

He is mostly amicable with the doctors. Anyone with a bright and cheerful personality can really bring out the best in him and he will go along with whatever they need to do. He gets tired of the doctors running neurological assessments on him, but goes along with it, just complains later. Says it makes him feel like a baby how they treat him, asking him dumb questions. I really don't think he absorbs much of what they tell him though. Or what I tell him either. I tell him the same details over and over and he just can't put it all together. I don't think he even realizes how serious his condition is.

He stood over me nervously while I filled his pill boxes this Sunday with the first 5/23 chemo round. He told me he didn't remember taking chemo before at all! He took it for a whole 6 weeks!! We've talked about it and he realizes now how badly his memory is shot. I think his memory loss is either from the surgery or from the location of the radiation to that part of the brain.

He made me dump out the evening pills with the dose of chemo in two of the pillboxes and show him exactly which pills were chemo (there were 8 of them, in addition to his usual three and a half Parkinson's pills for bedtime.) It was very overwhelming to see all of one weeks pills laid out before us. It is a LOT of pills. 6 to 7 times a day he must stop and take pills.

I wanted to slip an extra nausea pill into his morning pill slot, to be sure he would get sick with the Temodar. I made the mistake of mentioning it and he refused to let me. He said he wouldn't get sick...or if he did, he wouldn't tell me about it. It is so frustrating to me his childish refusal to take his meds. He just doesn't want to take pills--period. I am having a hard time getting across to him just how screwed he would be if he didn't take his pills. I'm afraid he'll get sick at his stomach and not eat, lose weight and weaken. He won't take the laxative either. So I worry about bowel obstruction and damage that can cause.

I can't be there all the time to hide pills in his food. That is what some folks on my support group do. He is not ill enough to justify daily in-home help, other than the mental aspect of things. He'll have to be down on his back before he'll let me hire anyone. If I didn't live a half-hour away, I could probably keep a better eye on him. I'm afraid his stubbornness will be his own undoing. He trusts me and obliges me more than anyone else, but even that is limited. Although I don't really need them at this point, I've thought maybe hospice might have some advice for me.

He did well with the MRI, bloodwork and an appt that day and was in a pretty good mood overall. Last stop we made, we ran in Walmart for a few things and as soon as we got back to the car, out of the blue he got irritated and asked why on earth he has to wait so long to hear back on what they saw. They said the radiologist would read it and forward the results to his doctor who will go over them on the 23rd. I am going to call this week and see if they can tell me anything earlier though.

 

[thistlebloom]

You are so strong.

 

[journey11]

You are so strong.

I wish I were just a little meaner, lol. I really need to put my foot down on some of this stuff, but it's really weird and hard switching roles at this stage of life (dealing with this much earlier than I expected.) My dad has always been a very stoic and intimidating personality. Even in my teen years, I'd never dare to mouth off to him or show any disrespect. If I did, I'd better be running at the same time.