Okay, so here it is....Dan has been in his new "home" for two weeks now. It was heartbreaking for our son & me to take him, he seemed so innocent & compliant. In the long run, that was better...no big scene or anything. He didn't question where, how or why. We & the nurses/aides just told him, more than once, that I was sick, that I needed an operation. When he asked what was wrong with me, we explained in very few simple terms. Told him I wouldn't be able to cook his dinner or wash his clothes for quite a while & that he needed to be there so someone could do those things for him. Went to see him a few times before I went to the hospital. One time I'm not sure it mattered whether I was there or not...no reaction of any kind to my presence. The next time he was cracking jokes & making smarty remarks, making people laugh! We were rather astounded, to say the least. Another time, we sat together, I put my head on his shoulder & he didn't pull away! I got a kiss & an "I love you too" from him & a hug (well, a weak one, but I'll take it) I won't be able to see him for a while, but talk to him on the phone. He doesn't have access to a personal phone, has to go through the front desk. I think he's adjusting, as much as he can do. They have told me he doesn't cause any trouble, no aggression, just a nice guy! He does wear an ankle bracelet because the first night he kept going for the doors!
I had my surgery,came home May 1st. It was ovarian cancer, the most common type (I don't remember the terminology!), responds well to chemotherapy. There is a spot of cancer on the bladder & in the blood supply to the small intestine (which is all I have, large bowel having been removed in 2007), but it would have been more dangerous to try to remove that, so chemo should take care of that. This has been extremely painful...I'm not a big baby & have a pretty good tolerance for pain, but this has HURT!!! I could never have looked after Dan here at home, so things have fallen into place just as they were meant to (so far). My son has been very good with all of this, relatives & people from church are looking after me, so I feel blessed in the midst of the trials of life.
Thank you all for your thoughtful & kind comments on the original thread (update)...you are a special group of people.
Mim, I'm so sorry that you have to deal with this personal health issue along with the stress and heartache of being a caregiver. Life just doesn't seem fair so much of the time. I wish you peace and strength for the journey - it sounds like both you and your DH are in caring and capable hands, and now you can concentrate on looking after you.
So good to hear from you Mim, we were worried about you and Dan. Your health issues are concerning but here's hoping that it may become easier as you go along, I wish you strength as you proceed. Very positive news about Dan, hope that it continues. All the very best, cassie.
Oh, Mim, so sorry that you have to go through all this. Thanks for the email you sent me, too. Hugs. (((((( )))))) You and Dan are on my mind a lot--and in my prayers.
Mim - good to hear from you. Remember to follow doctor's orders watching how much you lift - no heavier than a gallon of milk for now, no vacuuming, walk often doesn't have to be far, etc. Remember: you only one chance to heal right.
I have a friend who has ovarian cancer. Her's must be the tougher one cause she has been on chemo for 1 1/2 years. But, she has never lost her hair despite them using different chemo drugs. She was all prepared to loose it but is happy it did not happen. Hope you are as lucky.
Mim, I would ask myself how Dan would have responded as his old self, knowing that you had cancer and needed an operation. Nothing you posted mentions concern about you and that's one of the early things I noticed Dianne lost too. I don't know what having an autistic child might be like but I wasn't all that far away for some years where Dianne could talk and get along - but she didn't have the range left to actually think and be like herself.
It hurt me to realize how much I was on my own - but there was a certain comfort in knowing that her own concerns about herself and her future - and her concerns about me and my future, weren't really there. In some ways she was more a child and really did need more and more the 24 hour care she had around her.
Dianne loved me and she would have told me and she would have worried about me, if she had the equipment to do that with.
I would keep in mind what you said that within these hard challenges is the fact that Dan now IS in care and the transition was smooth and he's getting along. You have a strong son and support from your relatives and your church.
Now you are at home starting to heal from the operation that removed the ovarian cancer. In prostate cancer which actually becomes likely in males when we live long enough, half the time they recommend we just live with it. Try to keep remembering that you have have the best chance of healing well from the operation because you don't have to force yourself to do things to try and also look out for Dan.
The emotional toll of going through all this is very high. It's time to focus on letting your body heal and allow some time to take some of this in.
Mim, Thank you for posting. What a relief that Dan is adjusting well to his new environment. I am hoping that your pain subsides soon and that the chemo will do its job. This must be a lot for you to take in all at once - husband in care facility, you having a difficult diagnosis, invasive surgery, pain, and chemo. I'll be thinking of you.
Mim...I am sorry for the degree of pain you are having. I pray that it resolves very soon and you can laze about and regain your strength and stamina for the next phase of care that you are facing. I am glad you have support to get you over this large bump in the road. I am also very happy that Dan is acclimating so well. You are living one of our biggest fears as caregivers...something happening to us when we have someone that depends on us for so much!
A good Mother's Day....beautiful pink roses from my son. I am doing a little better each day, not so much pain & discomfort now.
Dan seems to be adjusting pretty well to his new digs...even though I can't get there to see him, I call. We chat for a very few minutes, then he says "thanks for calling". Kind of makes me chuckle. I'm not really sure that he realizes who he is talking to. I guess he spends most of his time walking the hallways, looking out the doors to the outside...just like he did at home. But he is apparently no trouble for them, is eating well, sleeping pretty well. That's all I can hope for at the present.
Hi Mim. I am glad you had a good Mother's Day. I am impressed with what a resilient person you are. It is great that Dan is adjusting to his new home and you are able to put your health first.
Lizbeth, I've been told before that I'm very resilient, so I guess I must be. I always liken our life experiences to a toy my children had when they were small - an inflated clown that had a weighted bottom so that every time it was knocked over, it bounced right back. (Maybe that's why to this day my kids simply detest clowns!!)
Jazzy, I'm thinking it will be permanent, but I guess it depends on how quickly the Medicaid process moves. If it's looking like it's being approved, the facility will keep him on, pending. I just can't imagine bringing him home, for either him or for myself. I'm facing a summer of chemotherapy & I don't know how that will affect me physically (I know already that I will lose my hair!) I just don't see being able to tend to him in the process. I'm not sure how it will work out - trying to take one day at a time. I'll be anxious for my driving privileges to be approved once again so I can visit him. It's about 20 miles from home, so I have to make sure I'm up for it. Depends on what the doctor says also...next Monday, the 16th.