I don't know exactly what to say in this post other than mom has been on a downward spiral the past few weeks. She fell at the nursing home again on March 12th and broke her shoulder and her hip. The ER doctor didn't see it and sent her BACK to the nursing home. The next morning Cheryl had the head of the radiology dept read the films and confirmed the 2 breaks. The nursing home staff proceeded to make her as comfortable as possible but she just went downhill very fast.

Her bp fell dangerously low so they called 911 I think on March 24th. She was admitted to the hospital where she needed 2 units of blood, fluids because she was dehydrated, needed blood, UTI, thyroid out of wack etc. The doctors discussed Hospice with us at that time as well, due to her leukemia being out of remission, therefore we contacted Hospice and they have put her under their care as of March 28th.

She returned to the nursing home on Saturday, weak, going in and out of sleep and we thought we would be planning her funeral for this week. However on Sunday, she was gotten up out of bed twice for 2 meals and was awake and alert.

She never ceases to amaze us. So who knows what will happen....I certainly cannot predict a thing anymore...

New Update On Mom

We fear mom to have had another stroke. Not sure when, but in the past 2 weeks. We can always tell because of her skin tone and her pupils are always blown. Of which they were today. I didn't go over but Cathy went this afternoon and then Cheryl went tonight.

While Cathy visited they had to change her ilestomy seal twice because they are no longer staying on properly. I'm not sure what is going on with that other than I believe her skin to be breaking down. If that happens, I don't know what they will do for her.

She's also had a sore on her ankle for a year now that has never quite healed, but no one seemed concerned about it as far as the medical staff. Well, according to Cheryl it looked worse tonight, and the nurse was in the room attending to something else and whispered to Cheryl that mom has MERSA. And didn't anyone call to tell us???

No. No one has called to inform us of this. You know...I have so much I want to say about the care of the elderly but I just don't have the energy at the moment to do it.

All I can say is I feel like going to a lawyer and drawing up a paper that states IF I get dementia in my old age, that I want to have assisted suicide. I DO NOT want to live like my mama and I don't want my children to have to deal with all this either. It's just not fair.

God??? WHAT is your purpose in all this? PLEASE reveal it to me. She is suffering...my sisters and I are suffering...and...I've had about all I can take. God forgive me for saying that..but it's the truth...

and I'll be indebted to grief for the rest of my life the day she passes on and I recall this post...I just can't win.

Latest Update on Mom

Thursday night at 8pm I received a call from my sister Cathy that she got a call from the nursing home stating that mama had fallen trying to walk out the door of the facility. I went over to see what was going on and she was out at the nurses station just sitting. They told me she was very confused and tried to leave saying she was going home. She fell down in the hallway, as she didn't have her walker. She had been very forgetful the week and very confused. I sat with mama for a couple of hours but honestly, I had to keep reminding her who I was, for when I first walked up she had no idea.....She didn't see like she was hurt in anyway she just looked sleepy. She asked me a few times if I was taking her home, something I've not heard her say for many weeks....and I knew something didn't feel right. But they were getting her to bed and I left.

I called the next morning to ask how she was and they said they were getting a urine sample because they think she has a urinary tract infection. They said we would have the results back by Sunday.

I had a test at the hospital overnight that I had to go for, so I couldn't go over Friday night and Saturday morning after being discharged, I went home to get some sleep as I didn't get much the night before, then I had to go bowling for Junior Achievement for work.

Today though, I went over with Richard, Sarah, Cathy and Phil. When we walked in the room mama was in bed, at 2pm with her nightgown still on. Her lunch tray beside the bed not touched. She looked at me and didn't recognize me again, not until I started talking. I noticed immediately something was wrong with her mouth...the more I prompted her to speak the more I saw it. I can't really explain it, except that it was drawn and very hard for her to move her mouth to speak. I told her I'd be right back and mouthed to everyone that she has had a stroke.

I'm not a medical professional, but I am not stupid either...and I've been around her and enough sick people to know when something is terribly wrong. I ran out to the nurses station and they said that they have not been able to get a urine sample, as she is not passing her water. Instantly I think the worst, her kidneys are shutting down and I just stand there...for the first time ever, I'm just froze. I burst into tears. The nurse asked me if I thought I could get her to pass water, and I just started walking without a mind, to her room.

After some encouragement I did manage to get her out of the bed but I had to lift her up. Cathy can't do that because of her back. Course mama has lost more weight and they've put her back on some meds for her appetite to increase it. I'm sure she only weighs about 100 lbs now if that. She might even be below that now.

She of course could not pass any water. So they are planning on doing and in/out cath to get the sample. They took her sugar while we were there and the number was only 55. She drank some juice and brought it up to 95 before we left. I've not known her sugar to drop down to 55.

And instead of being the one who always holds it together, I cried. And cried and cried. Like a baby. She kept telling me about how she had been on a trip to see a horse show, the stallions where they kick their feet up in the air. Every stroke she has, she has all kinds of hallucinations. At least this time they were pleasant. One thing about my mama though is she has lots of intuitions....like I do....and she kept asking me if it was ok with me if she went home.

Then even before I left and I was hugging her goodbye she told me not to worry about her, that she loves me and to be a "good girl" because in a few days she will go home....

To some home means like your house, the place you live...but in my mother's language that might not be what she is meaning...besides the fact that my sisters and I have had an uneasy feeling for a while now...

Again, leave it to me to grieve for her before she even passes away but this is what I do. It just kills me to see her in this condition. She doesn't even know to ask them for a drink when she's thirsty. What kind of life is that to live? And I find myself asking God, why are you doing this to her, to me, to my family? I know we are supposed to not question him but I'm sorry..I'm doing a lot of questioning tonight...

Update February 10, 2009

The weekend was very stressful for me. Saturday morning Cathy and I headed over to mom's apartment to get the rest of her things. Last weekend Cathy, Cheryl, Phil and Richard went over and got all the furniture out and packed up a lot of things. So, I decided since I was feeling better I should do my part.

I could not believe what all was left in the room, a lot of things. I repacked everything, trying to decide what stuff would go to mom's new room in the skilled nursing, what was going to who and what was getting thrown away.

After emptying her house so quickly this past summer and this being the final journey for her I realized it is really starting to wear on my soul. After we loaded up Cathy's jeep, we went to see mom in the rehab. She was not feeling well she said and was in bed at 2:30. I always look her over when I go, if her clothes are clean, is her ilestomy bag leaking etc..and of course it was. And she had fecal matter on the back of her shirt. So I commenced in undressing her, bathing her, reapplying the ilestomy and redressing her. When I changed her appliance I noticed that her skin is completely breaking down where the seal is applied. So I took photos of it with my cell phone so I could email them to Dr. Butler. Cathy and I visited with mom and I asked mama about emptying the bag and she didn't remember that there is a clip there to open. She has been taking the entire appliance off each time she goes to the bathroom. Her mind, slipping more away from us. And she looks at me, with those huge brown eyes and doesn't understand. I have become so much more patient with her. I have found that I don't get upset at her, I don't complain to myself about having to care for her because she honestly has no idea what to do anymore....and she looks to me as being her "mother."



I had plans with some friends for dinner that night and I almost didn't go because I was so...lost...when I got back home. But I went and had a great time.


Sunday I could not get out of bed. I have fallen again into the abyss of grief for her.

Monday she was moved into her permanent room. I'm not happy about it because her roommate is a lady she stayed with before in the rehab and the lady is nutty and stole mom's clothes. Mom hated staying with her and it caused great amounts of grief for us because mama would refuse to go into the room until bedtime and then she sat at the nurses station the rest of the day. I met Cathy over there after work and we took in some things to decorate her room and some clothes. We ended up not leaving a lot of things because of space issues, although there is room for her rocker and I'm going to get Richard to get it out of the storage unit. She loves to rock in mine when she comes over. She has the bed by the window so she can look out but I hope she doesn't get afraid.

We brought her stuffed animals to her too and she was so excited to have them. She hugs and kisses them and talks to them. Like a child.

I laid on the bed with her for a while and we held hands. It was nice.

When Cathy and I left she said to me "it's coming for you Mandy, with a vengeance"...and it did...for as soon as I got home I lost it...and I've been in complete tears and mental breakdown since leaving there yesterday. I cried all night last night, never slept and my eyes were so swollen this morning I could almost not put any eye makeup on. I wept at my desk all day today too...came home from work and now my stomach is a mess and I've either been asleep or in my room hiding so I can cry. Richard just doesn't understand this. His parents have never been ill. I would just assume be alone than have him try to consult me...don't look at me with pity...make me feel better....not worse...

We didn't hear anything last night so I guess her first night in the room went ok. Although she was upset because she kept getting lost in the hallway and couldn't find her brush, which is in the basket on her walker.

Dr. Butler came to see Cheryl at work on Friday. He told her that he thinks we need to start making the decision of what to do if mama were to come down with pneumonia or falls again...we need to determine if we want her to have treatment or to be made comfortable....he doesn't think prolonging her life is beneficial to her OR us. I am VERY torn over this. I understand what he is saying. But this is my mama....my only parent...I've already lost 2 dads...and all my grandparents......

my family dwindles to nothing...along with my mother's mind....and the strength that I thought I had for the whole situation...

Mom's New Walker!

Cathy bought mama a new walker, like most of the other residents at Our Lady. Here is a photo of it. It came yesterday and I know mama is going to be the belle of the ball over there with it! She'll be the only one with a pink one! Hehehe!

Update on mom January 16, 2009

Being as this is the first post on this blog, I'll give some background on my mom to those who don't know or didn't have all the facts. My mother has battled many things in her life that are health related but the most terrible of them all was an aneryuism. This incident began the day of my stepfathers death, October 7, 2003. Odell was under Hospice at that time and I along with my sister Cathy had moved in with our parents to help care for him and mom during the last 2 months of his life. Four days prior to his death I had to rush mama to the hospital where she was admitted with mild congestive heart failure. She was faring well but against her cardiologists wishes, he released her to go home to Odell where she had an extremely painful and tearful several hours with Odell...one that I will never ever forget...the grieving she had at that time for this man was enough to make anyone have a nervous breakdown...it was almost unbearable for my sisters and I to witness.

The morning of October 6th, Alan the hospice nurse told us he had less than 24 hrs to live. At that moment my mama retreated to her bedroom and did not leave it. Odell passed on at 7:25am on the morn of the 7th with me and my stepbrother Buck at his side. I would like to state that at this time, I was truly in the presence of God and have never felt in a more holy place since that time.

Mom became ill that night and we took her to the ER.

The next morning at 6:30am I received a call from Cathy who had stayed at the hospital with her, to come to the room asap. At 7am when I was getting in the elevator a code was called for my mama's room...

The next 48-72 hours were the most horrific times of my entire life. My mother suffered an abdominal aneryuism brought on by a clot most likely in her heart. Everything that could go wrong in her body, did. Everything was turned backwards...and upside down. The rupture of the clot caused her intestines and bowel to begin to die within minutes. Within an hour, a foot of her colon was dead with gangrene. She was on a ventilator, swollen twice her size, eyelids slightly open and her pupils blown. People gathered with us outside the MICU. Probably about 30 or so. Even people we didn't know, walking past us in the hallway were stopping to offer their help and prayers as my sisters and I stood, shaken to the core, guilt ridden that we had no idea how sick she was, and terrified that we were facing a double funeral. We had grieved for Odell for months and were ready for his passing, but our mama? No.

Within those 72 hours, she died 3 times and was brought back to life...her file, which I purchased a year ago from the hospital, is hundreds of pages long and weighs about 5-8 lbs.

The aneryuism caused her to have a stroke that night...and she's had many since then. The most recent being about a month ago. With those strokes has come MUCH brain damage and memory loss. And we've suffered as a family greatly over the past 6 years from watching the deterioration of her mind and memory.

She is no longer capable of caring for herself which will bring me to the latest update...

After this past stroke, she returned the nursing home called Our Lady of the Valley, THE nicest nursing home in the Roanoke valley. But instead of returning to her independent apartment there, she went to the rehab for therapy to build her strength back up. We received a call this past week from them stating that her rehab is over and she is ready to return to her apartment. I called the social worker there and requested another meeting, one that I could attend too, because I have several concerns about her returning to her room to live unassisted. The aneryuism caused her to have an ilestomy, similar to a colonostomy but higher on the abdomen, and with her severe rheumatoid arthritis it's becoming harder and harder for her to care for it...not to mention her memory loss.

Thursday night mama called me from the Sullivan center where she is staying and expressed to me that she had visited her apartment that day but didn't want to return and it was like talking to a child who didn't want to go to school. Funny how I guess God had already expressed this to me in my concerns the day before.

Cathy and I had the meeting yesterday with all the heads of everything at the nursing home. We came to an agreement after lengthy discussions from each person in the room, that mama remain in the skilled nursing facility part. She now requires 24 hour supervision. She requires cueing on dressing, bathing, brushing her teeth and hair, wearing clean clothes etc. Someone has to get her for her meals etc....she simply cannot be alone.

So what happens now? Well, we have to pay for her apartment for the next 30 days, that is $3710.00. We have 30 days to clean her furniture and belongings out. Since she has been released from the rehab part of the Sullivan center, the Medicare will no longer pay for her to be there. Therefore, she remains in her room there, but we pay out of pocket $266.00 a day until a permanent room is available. The administrator told us she didn't think it would be long before a room was available. Once mama's money is gone, what bit we have left over from the sale of her house this past summer, then Medicare/Medicaid will kick in and pay for her to live there 100%. So she is now in the skilled part, praise Jesus.

Several of the heads there stopped us before we left Friday to tell us how happy mama is there. That she is participating in therapy and enjoying it...she visits with people...and she is smiling. We've not seen her smile regularly for several months. When Cathy and I told her that she didn't have to go back to her apartment, she was so happy and excited.

I slept all night last night without the aid of sleeping pills for the first time in years.

She loves getting mail and pictures, (Jessica, Jay, Jenny..)if you have pictures of your babies, you can send her some as she will hang them up in her room all over...that is one of her pasttimes, to look at pictures. Email me if you want her address as I won't put it here as this is a public blog.

God bless whoever reads this and keeps up...and thank you too...