Tuesday, July 17, 2012
Sunday, July 15, 2012
Hospice
Keith and I made a tough decision this week. After much criteria had been unfortunately met by Keith such as barely being able to walk, more difficulty eating certain foods resulting in dangerous coughing and more, and with the help of the Palliative or Partners nurse we said yes to Hospice. They will soon set up a meeting to admit him into the program and explain more about its services. They will come to our home and will abide lovingly to Keith's wishes. They don't hover. They should offer some support for both he and I. I will keep you informed as we learn and live more of Hospice. The most important thing we would want you to know is that Hospice isn't a death sentence. In fact, some people even "graduate" out of Hospice.
I have been thinking a lot about "respite" care a lot. Many of you don't know what it is. I am learning that there are a few types of respite. For me, let's call it a "relief" for the caregiver. It's like when I ran track and handed off the baton to the next girl on our team with such relief that I was done. Ok, so I only anchored the relays throughout high school and college. But when I went to the Nat'l team a few times, I was among such wonderful and faster girls that I got to experience "the handing off of the baton," so I know what it feels like.
Anyway, I am asking to hand off the baton to you, our friends. Most of us do not like asking for help. We see it as weak or whatever, myself included. It was only lately I realized this was wrong. And what led me to think this is understanding that Keith "has" to ask for everything. So if he sees me feel bad about asking other friends for help, what might that mean to him. I'm not sure he is thinking about that at all because he is just trying to take the next step, literally, each hour. Plus he's not too into worrying about that kind of stuff as most of you know =)
So thanks for listening. You may not realize how much knowing you are there and here helps. Once I told you guys we needed help, you did it! Now to organize it and you've even offered to do that. For that and much more, Keith and I say thanks. We love you =)
I have been thinking a lot about "respite" care a lot. Many of you don't know what it is. I am learning that there are a few types of respite. For me, let's call it a "relief" for the caregiver. It's like when I ran track and handed off the baton to the next girl on our team with such relief that I was done. Ok, so I only anchored the relays throughout high school and college. But when I went to the Nat'l team a few times, I was among such wonderful and faster girls that I got to experience "the handing off of the baton," so I know what it feels like.
Anyway, I am asking to hand off the baton to you, our friends. Most of us do not like asking for help. We see it as weak or whatever, myself included. It was only lately I realized this was wrong. And what led me to think this is understanding that Keith "has" to ask for everything. So if he sees me feel bad about asking other friends for help, what might that mean to him. I'm not sure he is thinking about that at all because he is just trying to take the next step, literally, each hour. Plus he's not too into worrying about that kind of stuff as most of you know =)
So thanks for listening. You may not realize how much knowing you are there and here helps. Once I told you guys we needed help, you did it! Now to organize it and you've even offered to do that. For that and much more, Keith and I say thanks. We love you =)
Tuesday, June 26, 2012
Oh, if only.........................................
Oh, if only I could not vent in front of all of you, I might feel better. Oh, if only I would blog when things are going well. I could then prove to myself and the world that I am strong. But no, I post blogs when that which inside me has to come out. I do not feel strong, but these past two days have felt your strength and better than that, Keith's.
I will try to let you know how Keith is doing. Difficult at times, as the energy it takes for a lot of communication is draining. I want to talk and talk and talk to him because he is my strength, my best friend and husband. He gives such wise advice. I do push (encourage) him to speak when it concerns important issues like our family's needs. I want Clint and Kristi to hear from him as much as possible while they can.
All for now, Hopefully Clint will add more pictures. Thank you for reading. =)
I will try to let you know how Keith is doing. Difficult at times, as the energy it takes for a lot of communication is draining. I want to talk and talk and talk to him because he is my strength, my best friend and husband. He gives such wise advice. I do push (encourage) him to speak when it concerns important issues like our family's needs. I want Clint and Kristi to hear from him as much as possible while they can.
All for now, Hopefully Clint will add more pictures. Thank you for reading. =)
Thursday, June 21, 2012
Good News/Bad News (may be hard to read this one, sorry)
Hello everyone,
The good news of course is that the car wash was such a fun and successful event. The bad news is that I can't thank all of you individually. So again, thanks =)
Recently, I read about this husband who lost his wife a year ago, May to MSA. He says as the time went on he found himself blogging less. He had some specific reasons that I don't want to share with you but I can relate to what he said. Though we try to stay positive, our life is truthfully, not so fun. But are we suppose to have fun? Do we automatically deserve a fun life because we were born? I wish it were so. I soooooooooo want it to be that way. Day in and day out is becoming mundane. No, not everyday, but most. Yes we have some company but that has dropped off. Sometimes necessarily, as Keith is getting tired in new ways that don't show to others but do to me.
I'm venting as you can tell but also recording Keith's disease progression. You guys are not responsible for making us feel better but I thank you for trying. I don't know what we would do without this beautiful home we get to live in. Each day we are filled with love from all who live here. We get to hear sounds of laughter from the grandkids who live here and others who visit quite often. Precious ones! Sometimes, I feel that our heaviness hangs like a cloud over all who are near us. I don't want them to have to share it but they do want to help and for this I am grateful. I am also able to do some jogging and bike riding. This gives me a much needed break. Then I think about Keith, sometimes wanting to cry. He is getting out more but many times he is to tired after dr or PT appts to go anywhere. He does love his mochas and many times we drive through MacDonalds and get one. He is still one of the best MSA patients around. He only takes one med and is maintaining some upper body strength.
I think I am down in the valley, no maybe just a small hill since it can get harder if the Lord has that in His plan for us. I need prayers. My devotional time with the Lord is great but so often interrupted for Keith business that I feel quite disjointed. I could not, however make it without His word and your prayers.
All for now, I'm sure the next blog will be more fun. =)
The good news of course is that the car wash was such a fun and successful event. The bad news is that I can't thank all of you individually. So again, thanks =)
Recently, I read about this husband who lost his wife a year ago, May to MSA. He says as the time went on he found himself blogging less. He had some specific reasons that I don't want to share with you but I can relate to what he said. Though we try to stay positive, our life is truthfully, not so fun. But are we suppose to have fun? Do we automatically deserve a fun life because we were born? I wish it were so. I soooooooooo want it to be that way. Day in and day out is becoming mundane. No, not everyday, but most. Yes we have some company but that has dropped off. Sometimes necessarily, as Keith is getting tired in new ways that don't show to others but do to me.
I'm venting as you can tell but also recording Keith's disease progression. You guys are not responsible for making us feel better but I thank you for trying. I don't know what we would do without this beautiful home we get to live in. Each day we are filled with love from all who live here. We get to hear sounds of laughter from the grandkids who live here and others who visit quite often. Precious ones! Sometimes, I feel that our heaviness hangs like a cloud over all who are near us. I don't want them to have to share it but they do want to help and for this I am grateful. I am also able to do some jogging and bike riding. This gives me a much needed break. Then I think about Keith, sometimes wanting to cry. He is getting out more but many times he is to tired after dr or PT appts to go anywhere. He does love his mochas and many times we drive through MacDonalds and get one. He is still one of the best MSA patients around. He only takes one med and is maintaining some upper body strength.
I think I am down in the valley, no maybe just a small hill since it can get harder if the Lord has that in His plan for us. I need prayers. My devotional time with the Lord is great but so often interrupted for Keith business that I feel quite disjointed. I could not, however make it without His word and your prayers.
All for now, I'm sure the next blog will be more fun. =)
Tuesday, June 12, 2012
Saturday, June 9, 2012
Friday, June 8, 2012
Herald Article & Van Pics
Also, check out the new wheelchair accessible van!
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