God has a plan for our lives!

While riding home from taking Rick to the center, I was seeking to be in God’s presence. Since we are to call Him Abba Father or Daddy, I tried imagining that I was curled up in His lap. I asked Him, “Daddy, why haven’t you given Rick his healing?”

“Because I have better things planned for you and him.”

This is hard for me to accept. Did God, Abba Father, really say that to me?

Lord, I want to hear your voice. I want to be sure it is you, not just my imagination. Teach me to hear you. I am your sheep and I want to hear and know your voice.

Yesterday Rick finally had a good BM. I had been concerned that he was not having good BM’s. Then the past few times he has stayed on the toilet for long periods of time with only small amounts coming out. A couple of times the stool was big and hard and there was bright blood on the toilet paper. So Saturday night I gave him 2 senna plus. Then again on Sunday night and yesterday morning. Last night when he came home from the center, Debbie took him to the BR. Apparently he got seated crooked and ended up with stool where it didn’t belong…on the outside of the toilet and on the floor. Poor Debbie! She cleaned it up.

Rick has been better since I have decreased his Dilantin. He stayed awake all the way into the center today. He is walking normally again and eating better…feeding himself. He does better at home than in a crowd. The commotion seems to distract him. He is still sleeping most of the night with only one potty break. That is good for me. He3hasn’thad any of those anxious spells. He still shakes his legs, chatters he teeth and has muscle jerks. He is still hesitant to turn, step forward sit down. All of these things he needs firm direction on.

Hospice 2

Hospice came yesterday, 051508. Judy Moore, RN and Julie, SW. Judy did blood work for Dilantin level.

Rick has been very unsteady on his feet, leaning to the right when walking and shuffling. Sleeping most of the time.

Last night I got a call from the Hospice Triage nurse, Freda, saying the Dilantin level was 44.3 and this is toxic and she needs to report it to Dr. Pearce. I called Dr Pearce and he said to decrease the amount of Dilantin Rick is taking from 4 per day to 3 per day. This could be why Rick is so unstable and sleeping all day. We are expecting changes for the better.

I called Lynn, RN, at the center. She said Rick was sitting up straighter and he talked to her and followed her with his eyes. She said he was better today.

Hospice

We had our first visit from the Hospice nurse, Judy, and social worker, Julie, this morning. They said that the nurse who went to evaluate Rick at the Center on Friday, found him sleeping and could not arouse him. That is probably why he was accepted into the program. Jean Small, director fo the Center, said that shortly after the nurse left the center Friday, Rick was up dancing with her.

Julie is getting a wheelchair, bedside commode, and shower seat for us. They are being delivered this afternoon. Now that is fast work. They will provide a hospital bed if and when we need it. They discussed making a ramp for our front door steps. They have people who volunteer to do this.

We have requested to use the Hospice Home for while we go on vacation. They provide respite for 5 days. Anything over that we have to pay for. It is $180 a day, but is based on income. I feel we will not qualify for a reduction.

I spoke to Jean Small today and told her that I had told the girls that I felt that, baring a miracle and we are still believing for that, Rick probably has only 1-2 years yet. Jean just shook her head and said it was probably less than that. Hospice requirement for admission to their program is 6 months. Dr Pearce had to sign the papers indicating that for them to even evaluate Rick. They said that doesn’t mean that he will only live 6 months and that they have had people who have been around for 2 years after admission. Anyway, these are all new thoughts for all of us.

I asked Jean what stage of Alzheimer’s she felt Rick was in. A few months ago she said she thought he was in the lower part of stage 3. But today she said he was in stage 4. I looked it up on the list of the stages and this is what it says:

Terminal Stage – 1 to 3 years

Symptoms
• Can’t recognize family or image of self in mirror
• Loses weight even wth good diet
• Little capacity for self care.
• Can’t communicate with words.
• May put everything in mouth or touch everything
• Can’t control bowels, bladder.
• May have seizures, experience difficulty with swallowing, skin infections.

Examples
• Looks in mirror and talks to own image.
• Needs help with bathing, dressing, eating and toileting.
• May groan, scream or make grunting sounds.
• May try to suck on everything.
• Sleeps more.

I believe Rick still recognizes all of us. And I think he is still recognizing himself in the mirror. He hasn’t lost weight yet. But he isn’t gaining anything either. He definitely needs assistance with his care. He has not been able to communicate for a long time. He is not putting things in his mouth or touching everything. He dose see little things on the floor and picks them up and holds them between his thumb and finger. He is still continent. But if I miss his cues, then he has been incontinent. This has happened 2 times at the center and once here at home.

So now you have it. The most up to date report on Rick’s condition and the assistance that we are getting.

Again, I am so thankful to God for His provision. The Hospice services, I believe, are another way God is letting me know that He is taking care of me and Rick. I give Him all the glory.

To God Be The Glory

These last few weeks have been rather difficult. The change in Rick has brought about an urgency to find a care facility for him. The girls are concerned about my health and ability to stand up under the stress of caring for him. And I believe they are not able to care for him if I should need to be away for my job.

So we went looking at assisted living and nursing facilities last Thursday. Neither situation was what I wanted but would consent to it if need be. I had spoken to Jean Small, the director of the Adult Day Care Center that Rick goes to daily and she suggested we check into the Palliative care options that Hospice has to offer. So I placed a call to Hospice. They needed a referral from Dr Pearce, who gave it readily. The social worker came out last Thursday and the nurse went to see Rick at the center on Friday. Monday I received a call saying that Rick has been accepted into the hospice palliative care program. Praise the Lord!

This is what I am getting through this:

The nurse will see Rick regularly. They will do much of the assessments so that I don't even need to take him to the doctor. She is coming Thursday morning early before I take him to the center for her first visit. I was telling her about his jerking and she asked if it was time to do a dilantin level. I told her I thought it was, so she is calling Dr. Pearce to get his ok for her to draw his blood for the level. That is wonderful. And I don't get a bill for it. They will provide his meds for him, too, at no cost to me.

They bill Rick's Medicare for their services. There is a special part of Medicare for hospice services. They won't provide any service for us that is not covered by Medicare, unless they tell me first and I decide that I want to pay for it out of my pocket.
We may see about putting him into the hospice hospital, Kate B Reynolds Hospice Home,while we go on vacation. They do offer respite for care givers. (Cheryl's family and I are going to Massenutten, VA for the first week in June.) I don't know exactly how that works, but I would like to find out. It will be valuable for when I have to go to TX for my work. Cheryl says she doesn't think she can handle Rick like he is now. And I am pretty sure that is the case. It is hard for daughters to help their father with his personal needs. This will allow me to get a good night's sleep for a week or so and then I will be refreshed and ready to get back to caring for him. Even this is covered by hospice Medicare.
I have access to CNA services to assist with personal care. This isn't someone to come and stay with him for several hours a day. Just to come in and give the bath, assist with dressing, or whatever is needed. This may be helpful in the future.
There is a social worker to help with emotional support and other challenges that might come up. He/she knows what agencies might be helpful for our needs.
There would be a chaplain available to provide spiritual support. I can request a chaplain from my denomination.
There is a volunteer who may provide companionship, respite for family members, assistance with transportation and errands, and other support as needed.
They have grief counselors for me and anyone else in the family that needs it.
And Hospice is the first to call in case of an emergency, instead of 911. The hospice people will already know Rick's condition and will be much better able to decide what needs to be done for him.
All these people who work with Rick will meet regularly, I think I was told weekly, to discuss Rick's situation and come up with a plan for his care.
The way I see it is that I will have a host of people in the know about Alzheimer's and community resources to help me make the best decisions for Rick's care. I already have a sense of relief, just knowing that I will have these resources.
I do hope I don't have to put him in a facility. I really want to keep him at home if at all possible.
The girls want me to come up with a plan as to what constitutes the time that I can't care for him anymore and need to put him in a nursing home. I am thinking about this and hope to come up with something soon. They have been a big help and support to me. I am so blessed.
Thank you all for your prayers and love and support. Again, I am so blessed to have such a wonderful family, immediate and extended, who love and care for me.
It is my desire that God will be glorified through this situation. The fact that Rick has been accepted into Hospice services is one more way that God is saying, “I’m taking care of you and Rick. Continue to trust Me.” PRAISE HIS NAME!