He is exclusively using his wheelchair now. It can make for difficulties when going to people's homes who are not set up for that. Life.
Monday, September 27, 2010
Glad it is Monday. Ken's friend from high school and his wife came to visit this weekend. They got their own hotel room but even with that it made for a somewhat exhausting weekend. Just on the go the whole time. I was glad to say good-bye last night. The rest of the evening Kenny and I just zoned out. I think Kenny is slowing down a little. He sleeps in much later than before...takes a nap...
Posted by Karin Jones at 8:38 AM
Thursday, September 16, 2010
I can hardly believe that time is passing by so quickly. I am not too computer literate, so even a blog can overwhelm. But I have bigger things in my life that worry me now. Kenny is getting weaker fast. He fell on Saturday...hard hit on the head. A trip to emergency, stitches, concussion. He is getting better but his head is still dull.
He is in a wheelchair now almost full time. How can that be? He thought he had carpel tunnel in January...now...only September...wheelchair. This is too much.
Had lunch with Nate today. We had a good conversation about my future without Kenny. He offered me to live with them for awhile. Very sweet, but no way. I would not like that although I may sleep on the couch for a few nights! I must admit that the first night in this house without my Kenny will be suffocatingly hard. At least that is how I imagine it.
Posted by Karin Jones at 6:48 PM
Saturday, July 31, 2010
Life continues and I am finding a fair amount of emotionally bad days. Sometimes I am sad...sometimes I am even mad. Still, for the most part, I am happy, and really, really want to stay that way throughout this ordeal. I have been a lucky woman to have found such a love, I don't want to pass through these days and miss the wonderful blessing that has come to me.
Still, it can be hard, and i don't think I have even come to the hard part yet! Last night we babysat the grandkids. Kenny is really not much help anymore and in fact he is one more that I need to watch out for. I need to get the kids AND him out of the car. At this point he can still get out, but I get his walker. If I think getting him out now is hard....wait. Anyway...It is just such a strange time.
The doctor said he probably has about a year. Yes...i can see that. He is getting weaker by the day it seems. He told me this morning that he wants to continue to have a great relationship with me as his wife...not his nursemaid. Ok...I need to keep that going on my end as well because I can see how I can feel the nursemaid part fits me better than wife. It will only get harder with that one.
A friend called yesterday and encouraged me to take care of myself during this time. I am getting chubby and I felt a little offended as I felt she was referring to that. Ken and I have laughed about that, and he feels that is NOT what she meant, but still, I sort of think she did. We were talking the night before about laying by the pool and I said I really don't want to do that now because of my chubbiness. So....I think....
Another friend....a very good friend....said to me the other night...."when Kenny dies, the world is your oyster". I am not exactly sure what that means, but I know it was meant to encourage and indeed it did. I will be ok. My life will still be sweet no matter what.
Posted by Karin Jones at 10:29 AM
Wednesday, July 21, 2010
The last few days have been quite good. I have not felt "down", but I feel it creeping in this morning. I turn to the Lord, for he is my help. I cannot do this without Him....I don't want to. I know I can have the tendency to daydream about something pleasant to keep my mind off the real stuff that is going on, but I do not want to do that. It is a false, temporary comfort. What the Lord gives me is real, and lasting, and it causes me to "stay" in the present...to stay in what is my reality.
I have had some alone time. Not much, but enough to get a little more rejuvenated. Kenny is such a dear. He understands me and does all he can to help me. I have an amazing husband.
Posted by Karin Jones at 7:49 AM
Tuesday, June 29, 2010
Life goes on. Love goes on too. I want to love this man that God has put in my life. I want to love him well. I know I have days when I feel tired or frustrated by the situation. How do you live one day at a time when this whole huge future seems so scarry. But by God's grace I do. By His strength I will.
I have my own issues. Things completely separate from my husbands ALS. They seem so small, but I feel I need to make sure I am heard too. My husband wants that. I know. But it is so hard to share some silly thing I am going through when my husband is dying.
Today. Somewhat hard. But... life is precious and I want to truly live.
Posted by Karin Jones at 5:38 PM
Tuesday, June 22, 2010
Here we are. Summer. I can hardly believe we are almost through the month of June. Ken continues to weaken. To me, rapidly. Just January he thought he had carpel tunnel. Now he has ALS and can hardly walk. He fell yesterday in the house and almost hit his head on the fireplace hearth. He didn't seem fazed by it but I was.
We had people over last night. A spontaneous call for "Happy Hour at our house at 5"! It was great fun...about 10 of us. We all thought...why not keep this up...go to each others homes...everyone can bring an appetizer and bottle of wine. Sounds like fun to me.
Kenny and I have been referring to our place as living in the south of France. Indeed it feels like that and our lifestyle feels it to be so. We are living simply, loving life. Drinking our wine on the deck which overlooks nothing but trees and the hills beyond. My garden is yielding now. We have had the best broccoli I have ever eaten from our garden. Lettuce...just go and pick what I need for salad...I love it!
We are talking about learning the French language. Ah...won't that be sweet?
Posted by Karin Jones at 7:10 PM
Thursday, June 10, 2010
Yesterday we went to Stanford for a second opinion. I was pretty much thinking 'what's the point'? since Ken was diagnosed at UCSF with ALS. Quit a reputable place. How could they be wrong... Well...they may be...possibly.
Basically the doctor at Stanford said that Ken's is a perplexing case. He said if he was going to diagnose him based on the information he had, he would lean very much toward MMN. But since Ken did not respond to treatment, he would have to lean toward ALS. But Ken has no reflexes which seem to be the perplexing part of the ALS diagnosis. He has nothing going on with his mouth either.
Anyway...more tests. A little more time to hope. I really believe this is all going to turn out OK. Ken will be well one day. God will heal...and it will most definitely be HIM that does it. A miracle indeed.
Posted by Karin Jones at 9:52 PM
Monday, June 7, 2010
We had a very fun weekend. By the end of it I was pretty "peopled out". I get that more than Kenny and think he should get himself back in the PC club to have other around him.
On Friday, I went to the lunch bunch, then Nate & C came over with kids...hung out until we left for dinner with another couple...Sat....BBQ (early...4) until 9....Sunday...church...Laplaya Garden Party....Small group meeting for dinner. AHHH. It's Monday....a small reprieve!
I can see things a different and will only continue to get more so. Ken sat throughout the whole garden party. I got the wine...food...others came by to chat. I know this is how it will be from now on. I dropped him off...picked him up.... I felt edgy by the end, mostly because I was wanting down time and we still had two more events to go to (one we cancelled).
At the prayer time in our small group, Kenny prayed and was teary. I asked him about his tears after and he said he is just worried about me. That is my guy....I adore him.
Posted by Karin Jones at 6:33 AM
Friday, June 4, 2010
I talked with my ex sister-in-law yesterday. I hadn't talked with her for awhile so she heard for the first time that Ken has ALS. She was very encouraging. She said I would be fine. She said I know a lot about love, and men and how to be...that there would be someone new for me someday. Funny...writing this, I think...what is so encouraging about THAT....it sounds sad. But, it did and does encourage me. I will be ok...no matter what happens.
Today I am going to join some friends on the patio of Bernardus in Carmel Valley for a glass of wine. The weather could not be more perfect. My kids are at the CV river today so I told them to stop over for a visit after. I hope they come.
Tonight...dinner on the wharf with another couple. Could life be much sweeter? Well...yes, of course it could be. I would like my husband to be well. But even so...it is a beautiful day and I have much to be thankful for.
Posted by Karin Jones at 12:50 PM
Wednesday, June 2, 2010
Things are a little brighter. Not sure why, other than that is what life is like. Not all days are hard, and not all days are bright. We could not survive if we lived in the dark too long. The Lord has been my help...this I know.
We go to Stanford a week from today for a second opinion. I still hope...very much so, that this is not what they think it is...or even if so...the Lord will heal and I will have my beautiful husband for a long time to come.
One thing I know for sure...I want to truly love my husband the way he deserves to be loved every day...no matter what. I want to love him well and I know there will be days when that may not come naturally. I need to remember...the Lord will love through me if I just let Him.
Posted by Karin Jones at 9:51 AM
Monday, May 31, 2010
Yesterday was a hard day. I cried a lot. This morning too. I cannot believe this is happening. I read a lot of material about ALS....my husband reading it too. He is so even about everything...I seem so up and down....but lately down.
I know he wanted to cheer me up so decided to have lunch at Bernardus. A lovely place...the weather was perfect. We had picked up a wheelchair the day before and he said maybe for experiment sake we could try out the wheelchair. I lost it. Not the bawling out loud stuff, but a steady stream of quiet tears. I am not ready for that! I feel like a wheelchair is a huge turn in the road and I just don't want to do it.
Today I had a class at 8 a.m. so was on the road early. Prayed while driving which lead to more tears. I pretty much had those tears early and the rest of the day has been ok. Laid in the sun...went to see Sex and the City. Glass of wine on the deck at home afterwards...soon...Bachelorette!!! So...no tears. I need to be this more. Happy and in love. If these truly are my husbands last days I want them to be happy ones.
Posted by Karin Jones at 7:08 PM
Sunday, May 30, 2010
Today we woke up to teeny, tiny turkeys on our back deck. They were making their way to the roof where hopefully mommy turkey was. I love these little joys. Living in the country has been such a treat for me. I look at our small house....perfect for the two of us. We bought things in "twos" too. Two adirondack chairs, two lounge chairs etc. We are meant to be a pair for a long, long time. I cannot imagine life without my Kenny!
Yesterday proved to be a good day. This again proves to me the importance of living one day at a time. We drove to Oakland and had lunch with CB, then met my sis to pick up a wheelchair. UGH. The thought of it. I have a hard time imagining that we are close to that point. Yesterday I was talking with Ben and Ruth, telling them how difficult it is for Kenny to get up from the couch. Ben offered to buy Kenny one of those chairs that helps you stand. I told Kenny about that and he said it wouldn't really be worth it since those chairs are made for people who can stand...and he won't even be able to do that. That a better investment might be a hoist type thing to help move him from bed/couch to wheelchair. Tears are coming again....
My ex sent Ken a card with his condolences. Thoughtful, I thought. Ken's ex will be coming here soon to participate in a business meeting. She has wanted nothing to do with me, so it will be interesting to see if she is willing to meet me at this point. I really don't care.
Kenny and I are reading the book "He Loves Me" by Wayne Jacobson every morning. A chapter a day. Very good. Such a great reminder that even though we are going through all this stuff, our God is very near and loves us very much. I could not, would not, want to go through this time without Him!
Posted by Karin Jones at 6:50 AM
Saturday, May 29, 2010
Yesterday was a good day. I am trying to keep it that way. One day at a time..and good. I had lunch with Debbie J., my old friend with whom I have not really had much of a relationship in years. I lost the friendship with many people when I divorced my husband of almost 30 years. I was a pastor's wife...had a lot of people around me, but few during the time of divorce. Not all because I was abandoned. I am sure it was mostly my desire to remove myself. I know people would feel the need to tell me I shouldn't do this and frankly the decision was made. I spared them of having to do that. But now....four years later and a new, wonderful husband, I am feeling the desire to reconnect with some of my old friends. Especially since my husband has been diagnosed with ALS. I know the road ahead will be tough and friends are always good to have around for moral support. The one thing I need to remember is when I do get together with my old friends is that I really need to leave the past in the past. I talked too much yesterday about this and that and today I have regret. I don't need/want to be bringing up what happened and why. No ones business and again...it does no good. So....I learn. And move on. And hopefully I will stick to this and not be drawn in when I get together with my next old buddy.
I went to my old work place yesterday too. A lovely restaurant with lovely people working there and lovely customers too. There were a few old customers I would see on a regular basis that I sat with and caught up. Two, I mentioned Ken's condition- both turned very grave. One told me his brother died of ALS....a horrible disease he said. He got teary as he told me what a rough road was ahead. I know it...but I don't really KNOW it. I think there is still a measure of denial....this really isn't happening. All will be ok. Kenny will be fine again. "Lord, please!"
Today Kenny and I are going to Oakland to meet a friend for lunch who is visiting from Idaho. From there we will meet up with my sister who is going to give us a wheelchair. A wheelchair. So far, life has not been too distressing. Sure, I have to help Kenny get dressed and a few other things, but for the most part everything else is as normal. Sure, no more long walks or exercise classes, hikes or dance classes. But that has not been hard to handle. A wheelchair though. That is the beginning of different. The beginning of difficult. The beginning of "I don't want to do this anymore!" and yet I know it truly is just the beginning.
The man yesterday that I spoke with. I asked him if his brother was able to stay home and he said yes, up to the last few months, then he was in an assisted living place. Kenny had mentioned moving to one...the both of us. Depressing? yes. I am sure it would be. I want to stay here, in my lovely house in CV. Even without Kenny I want to stay here. But I cannot imagine being separated from him and I am sure he would not want that either. What to do? I don't know, but I also know I don't need to worry about it now. Today is a new day, and I believe it will be a good one. I can do today with the help of the Lord.
Friday, May 28, 2010
I will most likely write ever day or close to it. I have always been a journal writer and this will perhaps take it's place. You see, I just got a MacBook laptop so I can now sit on my bed and type away.
Ken and I went to a local restaurants birthday party last night. We saw a lot of people we knew. A few I was able to share about Ken's condition. It really floors people when they find out. Everyone has always commented on what a cute and perfect couple we are. Ken is 6'3", tall, dark, and handsome. I love being by his side. The love we have for each other is evident to all.
I hope I can do this. Caring for him the way he is going to need it. He told me this morning that he is not sure how much longer he is going to be able to get up and go to the bathroom in the middle of the night by himself. I never want to resent his neediness and in fact always try to imagine how he would be treating me if the tables were turned. He would care for me with joy and sweetness probably 100% of the time. That is how he is. I on the other hand am not that sweet although he always says I am. I am all too aware of my selfishness. I don't want to get up in the middle of the night to take him to the bathroom.
I must go to the One who will give me all I need, when I need it. My husband has said many times "God will not give us more than we can handle". I suppose for me, a better way to see it is, yes...He will give us more than we can handle, but He will be our strength through it. We will need to rely on Him. How faithful He is!
Thursday, May 27, 2010
I want to write about things I think, feel and wonder about. I am in a strange place in life and would like to keep track of thoughts as much as possible.
My name is Karin and I will be 55 in July. I feel so young...much younger than my years. I have two grown kids...both doing great with great spouses. I have 5 grandkids and one more on the way. I spent most of my adult life with a man that was a very poor fit for me. I finally divorced after a lot of painful things (perhaps that will come out later) and was on my very own for the first time at the age of 50.
I am a Christian. I went through a period of feeling far from the Lord. Partly because of my "failure", partly because I just didn't want to struggle.
I met a man just over three years ago. Gorgeous. When we met I think it is fair to say it was love at first sight. We have been pretty much inseparable ever since. I have never, ever felt so loved. He is amazing. Perfect for me. He adores me and lets me know in a million different ways. I adore him too and he lets me love him the way I need to love. Beautiful. We got married in September. Moved into a little love nest in beautiful Carmel Valley. What a perfect life.
He is 49 years old and he was just diagnosed with ALS. That means I won't have him long. I am not sure what else that means but I know it will be difficult. I know I need to live one day at a time. I know the Lord will give us strength to go through this. I still hope for a miracle.
I have a multitude of thoughts. But I will end here. Tomorrow is another day...
Posted by Karin Jones at 1:49 PM