Alzheimer's Community

Kathy, I'm so sorry to read this.

I understand how hard this is. My dad has multiple chronic conditions on top of the Alzheimer's. It just makes the situation all the more difficult, but we press on and get our loved ones the care they need.

I will be praying for you, your husband and your family.

I'm so sorry, Kathy. What a blow for both of you. The fact that it could and should have been picked up earlier makes it that much worse. Did anyone have an explanation for why it was not brought to your attention two years ago?

Do you know if there's any way to keep the kidney disease where it is now, or even improve it? Or is it just going to get worse? Do you think Ken understands the diagnosis?

You have so much to deal with -- can you join a support group or maybe get some counseling for yourself? I know you have to just keep putting one foot in front of the other, but please don't try to do it alone. Talking here probably helps you some, but I hope you'll think about getting some real-life support or counseling. You're carrying too much on your shoulders and you need to unload a bit of the burden.

Please keep us updated. I'll be thinking of you.

Carol

Carol, I'm getting fairly bold in talking to these 'professionals'. During a meeting with the diabetic counselor who is supervisor over the dieticians, I told him that I felt they were falling short of educating people on kidney disease. he stated that nothing is done much until a person gets in the 3rd or 4th stage. He said, "We only do what the doctors tell us to do." I thought, "How sad!"
In the kidney test, The GFR level is being watched closely and it went up from 42 to 57 and down to 50, from April to June. the counselor said losing weight helps the numbers to go up. He said that Ken could stay in stage 3 for a long time. I have my doubts. Now, when we saw the dietician, I told her we needed to know more about the diet for kidney disease. she said, "we don't do much in diets for kidney disease." I could hardly believe it. she really didn't know what to do until I told her some of the things the NP told us to watch. Then she did a good job getting information off the internet for me. Now, she'll be able to help someone else better.

Ken realizes completely what he is going through. He doesn't talk about it. He probably should. Yes, CKD will get worse. It is just a matter of how fast.

When I hear attitudes about CKD and theirs nothing that can be done, I think, well, there's no cure for Alzheimers either, but we try to slow it down and live the best that we can.

In essence, kidney disease is treated like "no big deal". "you can't do anything for it except to maintain the hypertension and diabetis". I did not agree. I told them that it is like car maintenence--preventative maintenance--only this is body mainenance." most of it is through diet and what to avoid and watching levels of potassium, A1c, phospherous, etc. I have made a chart of each item on labs that are low and high and the ones we have to watch for CKD, from Sept. '09 to present. This is how I'm helping myself deal with this--staying on top of the situation and keeping doctors, NP, and 'wellness staff' informed. With all the support you all are giving me, one on one, you help me so tremendously. Thanks to all of you,
Kathy

Hi Kathy.

How discouraging that the medical professionals are taking kidney disease so lightly -- that's really shocking. It does seem that there must be ways to slow it down, as you said, and it would be nice to think that doctors took that more seriously.

You said that losing weight can help -- does Ken get much exercise? (I know that can be a big problem with Alzheimer's patients -- my uncle wouldn't do more than walk to and from the car.)

It sounds like you're doing a wonderful job of advocating for Ken and helping him try to keep everything under control. I think you're absolutely right, too, that it's a great way for you to try to handle what's going on. You're actually doing something, rather than just sitting and worrying, which would be an easy thing to do.

Thanks for staying in touch and keeping us updated. I think about you often and am so sorry for all that you and Ken are going through.

Carol

Hi Carol,

Ken has all kinds of resources available to him with the latest exercise equipment. All three locations where we eat lunch has exercise equipment. There are exercise chairs made especially for people who can not actively exercise, the chairs move the body and keep the joints moving. Then as a person is able, like me, I put resistance against the movement. His legs are weak and he can't do the treadmill. He used to walk 1-2 miles at a time. However, we have a nice covered patio the length of our house and in all weather, he can walk on it.

I asked him this morning if he felt that he had depression. He said 'yes', when I can't get out and do what I want to do, it is depressing. This morning, he started with a movie. I called him to breakfast and when we had the above conversation, I said 'sitting and watching movies all the timne is depressing.' 'we should be on the patio, it is a beautiful morning and you can walk up and down---so we did. There are chairs the full length of the patio, so when he has to, he can sit down.

When I take him to an activity center and stress exercising in the chairs (which is simple) he refuses and says he'll sit in the easy chair and watch TV and wait for me. He gets stressed when we get there and I start stressing the importance of exercising. There is the special blooming bush that he likes and we have flowers hanging around the patio, also 2 wren houses. So it is a wonderful atmosphere. With all this going on this morning, I forgot to give him his medicine. He has 20 pills for various medical problems including Aricept and Naminda. I feel so bad when I forget his pills (he takes them morning, evening and bedtime).
I really feel stressed in trying to do all his remembering and mine to. Most of the time, I do okay. He even reminds me of his medicine at times.

Thanks for caring
Kathy

Thank you Dave,
I plan on keeping him home and I know it will be overwhelming. I can't imagine putting him in a nursing home even if it is alzheimer care. I know when the doctor recommends a person goes to the nursing home, medicare will pay for it for a while. Otherwise, there is no resource for this kind of care. I have a feeling I may have to put my home on the market. If so, so be it. Living in a small town, we are limited. However, I try not to think about it and take it as it comes. I'm glad your Dad is better.
God Bless and thanks for the prayers.

Kathy