Rough day for the lady but good news on the financial front
Dear Family and Friends,
Nan started the day feeling rough and all morning it only got worse. She was just through with Terry who could not get blood to draw this morning and then the wound care nurse arrived to do her painful replacement of the nephrostomy keepers on nan's back. By noon she was worn out and ready to sleep. With a little chemical help Nan fell asleep and rested for several hours only waking for slight breaks.
Mid afternoon I finally got through to Social Security but they could not talk to me without hearing in Nan's own voice that it was OK. I had to wake Nan from a very deep sleep and help up fingers so she would know when her birthday was and her social security number. The news we received was well worth it. We found out that our monthly disability check will be $1,257 deposited on the last Wednesday of each month, we also learned they had already paid the lawyer his money and our money had been direct deposited into our private account. It was all good news for Nan as the news from Blue Cross today was not so good.
Last week a representative from Blue Cross had said they would pay for custodial care, that is help with Nan during the day. They said just find an agency and Sylvia found an agency. When I spoke to them they said they had never been paid by Blue Cross and I'd better check it out. So I called Blue Cross again and this time spoke to a patient advocate. She tried but failed to obtain permission of our hiring someone to help part time. But I began to realize that perhaps we had an answer already. The cost per hour for help is $17.75 and if we use someone about 6 hours the cost is a little over a $100 a day. Help can be scheduled 48 hours in advance and can be one day or 5 depending on our need. There will be more than enough funds from Social Security to cover the cost of hiring some help to be with Nan when friends and family cannot or on the days I have to be out working. So I think it all will work out after all. We are very grateful to those who helped us get the Social Security bandwagon rolling, Marilyn especially and also Terry the nurse. Sylvia went over and sorted SS papers too.
Since selling the Fiero brought us much needed money we were able to make a partial payment to AMEX today and also to obtain a new shipment of Lovenox shots that we have not been able to order since our part of the cost is over $350 a month. They will arrive tomorrow and we can get Nan back on the proper schedule of this vital blood thinning medicine.
Late this afternoon while Nan slept in her recliner I slipped out to do a local appraisal for a few minutes and then returned to sit with her and rub her feet a bit and help her. Taking her pills tonight really set her off and she has been vomiting quite a bit this evening, she lost one AMN pill to the throwing up and could not get herself to take the other one.
Tomorrow we have a 11 am appointment with our Dr. Makker in Tracy and then back home where a friend is going to sit with Nan and I am hitting the road to do a Brentwood relo appraisal. We hope to be able to get better pain control meds and some med prescriptions updated while we are with him. Nan will also get a B12 shot as her body can no longer absorb the B12 from normal sources. It usually gives her a bit of a lift.
On Wednesday Joyce Western is going to come again to sit with Nan and then Bob and Carrol are coming over on Thursday. We were both so surprised that they could come and we appreciate all the wonderful helpers this week.
Nan got to talk to Sharon and Dana today and enjoyed talking to both. Dana mentioned coming out in Nov. to help decorate the house for Christmas and the thought of having Marilyn and Dana here decorating the house gave Nan such a lift and put a smile on her face. Sure hope it can happen.
So this evening we have much to be thankful for and at the same time we need to pray earnestly for Nan. This has been a hard time for her with the pain levels so high that there is little joy left in life. This evening I was able to show her the video clip Jason and Jo sent of Timothy kicking, moving about and shining his big beautiful eyes at his loving parents. Nan loved it and had me play it over and over again. What a thoughtful thing for them to do for their mom.
I am tired now, I started preparing the meds, TPN, supplies we need upstairs about 9:30 and now it is almost midnight and while Nan is sleeping I am typing this message to you. And Carol in N. Carolina while I love to hear from you I feel guilty having you have to write messages in the middle of the night. I hope you can sleep tonight, all night.
Please keep Nan in your prayers. I have never experienced anything like this with pain and suffering going on for day after day, week after week and now month after month.
We certainly appreciate your being involved in our lives and if we can help you in any way let us know immediately.
love
tim and nan
Nan started the day feeling rough and all morning it only got worse. She was just through with Terry who could not get blood to draw this morning and then the wound care nurse arrived to do her painful replacement of the nephrostomy keepers on nan's back. By noon she was worn out and ready to sleep. With a little chemical help Nan fell asleep and rested for several hours only waking for slight breaks.
Mid afternoon I finally got through to Social Security but they could not talk to me without hearing in Nan's own voice that it was OK. I had to wake Nan from a very deep sleep and help up fingers so she would know when her birthday was and her social security number. The news we received was well worth it. We found out that our monthly disability check will be $1,257 deposited on the last Wednesday of each month, we also learned they had already paid the lawyer his money and our money had been direct deposited into our private account. It was all good news for Nan as the news from Blue Cross today was not so good.
Last week a representative from Blue Cross had said they would pay for custodial care, that is help with Nan during the day. They said just find an agency and Sylvia found an agency. When I spoke to them they said they had never been paid by Blue Cross and I'd better check it out. So I called Blue Cross again and this time spoke to a patient advocate. She tried but failed to obtain permission of our hiring someone to help part time. But I began to realize that perhaps we had an answer already. The cost per hour for help is $17.75 and if we use someone about 6 hours the cost is a little over a $100 a day. Help can be scheduled 48 hours in advance and can be one day or 5 depending on our need. There will be more than enough funds from Social Security to cover the cost of hiring some help to be with Nan when friends and family cannot or on the days I have to be out working. So I think it all will work out after all. We are very grateful to those who helped us get the Social Security bandwagon rolling, Marilyn especially and also Terry the nurse. Sylvia went over and sorted SS papers too.
Since selling the Fiero brought us much needed money we were able to make a partial payment to AMEX today and also to obtain a new shipment of Lovenox shots that we have not been able to order since our part of the cost is over $350 a month. They will arrive tomorrow and we can get Nan back on the proper schedule of this vital blood thinning medicine.
Late this afternoon while Nan slept in her recliner I slipped out to do a local appraisal for a few minutes and then returned to sit with her and rub her feet a bit and help her. Taking her pills tonight really set her off and she has been vomiting quite a bit this evening, she lost one AMN pill to the throwing up and could not get herself to take the other one.
Tomorrow we have a 11 am appointment with our Dr. Makker in Tracy and then back home where a friend is going to sit with Nan and I am hitting the road to do a Brentwood relo appraisal. We hope to be able to get better pain control meds and some med prescriptions updated while we are with him. Nan will also get a B12 shot as her body can no longer absorb the B12 from normal sources. It usually gives her a bit of a lift.
On Wednesday Joyce Western is going to come again to sit with Nan and then Bob and Carrol are coming over on Thursday. We were both so surprised that they could come and we appreciate all the wonderful helpers this week.
Nan got to talk to Sharon and Dana today and enjoyed talking to both. Dana mentioned coming out in Nov. to help decorate the house for Christmas and the thought of having Marilyn and Dana here decorating the house gave Nan such a lift and put a smile on her face. Sure hope it can happen.
So this evening we have much to be thankful for and at the same time we need to pray earnestly for Nan. This has been a hard time for her with the pain levels so high that there is little joy left in life. This evening I was able to show her the video clip Jason and Jo sent of Timothy kicking, moving about and shining his big beautiful eyes at his loving parents. Nan loved it and had me play it over and over again. What a thoughtful thing for them to do for their mom.
I am tired now, I started preparing the meds, TPN, supplies we need upstairs about 9:30 and now it is almost midnight and while Nan is sleeping I am typing this message to you. And Carol in N. Carolina while I love to hear from you I feel guilty having you have to write messages in the middle of the night. I hope you can sleep tonight, all night.
Please keep Nan in your prayers. I have never experienced anything like this with pain and suffering going on for day after day, week after week and now month after month.
We certainly appreciate your being involved in our lives and if we can help you in any way let us know immediately.
love
tim and nan
posted by Tim Mustard @ 11:27 PM
3 Comments:
At 6:12 AM,
Anonymous said…
GOOD MORNING!
Good news on the SS! Now you don't have those big bills for Blue Cross and you will have income coming in. Your Blue Cross will now go to a supplemental income which will cost a lot less! This should make them happy. Also, I do believe that the Medicare will pay for respite care. Check it out anyway ~ in your spare time. So good to have more income coming in and not quite as much going out on health care.
No need to "feel guilty having you have to write messages in the middle of the night". It helps the time pass when I can't sleep. I slept a bit more last night. There are just some nights when I'm wide awake.
I've been doing a lot of sorting and "getting rid of" this week. If we ever do sell this place it will need to be done. Why not get a head start on it? Our church school has a huge yard sale about every 3 months. I try to contribute to their cause as much as I can. Where does all this "stuff" come from anyway?
I'm off to get my hair cut this a.m. I pray that you will have a good day today ~ less pain, more $$$ coming in more rest for your weary body.
Love and prayers ~ Carol
At 6:50 AM,
Anonymous said…
Tim,
I, like Nan, have been using a little chemical help myself. Mostly just the basics, nothing fancy. I just adjust the quantity as needed. Some of the medications even qualify as major food groups but some of them are quite expensive as well. For example there is the $3.80 per perscription of STARBUCKSMOCHA and the $5.00 perscription of PRALINESANDCREAM thankfully only taken on the weekend's. Fortunatly I have plenty of TRANSFATS available from passed transactions so I don't have the expense of purchasing that! There is a side affect of that however. You can't find a hat that fits or much else that matter.
I am praying that the other half of your good day shows up. Now that there is an improvement on the money front we look forward to an improvement on the pain front.
Wes
At 9:38 AM,
Anonymous said…
Good News indeed from SS!
Finally some much deserved relief from Uncle Sam. We have all been Praying for this to happen and the Lord has answered by getting the right wheels to finally move, (Even the Car Wheels).
We will be over Thursday for sure, Carrol feels that She is now physicaly strong enough Herself to be of some Help to Nan. She is a Wonderful Nurse and misses Her daily involvement in that field so very much. Cancer is devestating in so many ways that are not always seen on the outside.
Have a good day at the Dr. and We will be Praying for some positive action that will bring relief to Nan.
Carrol's Appointment with the Surgeon Yesterday went well, all of the stitches(Right Hand) were removed and the Dr. says that Her feeling in the thumb,index & middel finger should gradually return but it takes 8 months to reach it's maximum . At that time it will be as good as it will get. The Burning Pain that She has suffered in the mornings is now gone and for that We are most thankful. She will continue to wear the Left Protective Wrist Guard while She sleeps. This has eliminated the burning from the Left Hand too so She will not have that surgery done till January, (If Then)
Love & Continued Prayers,
Bob & Carrol.
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