Last post

April 13, 2018

Dear Readers,

This will the last post that I will be doing. Alzheimer left us today and will not be back. JW passed over this morning at 8:30 a.m. Our whole family is preparing to celebrate his life in the next few days. My parents were married for 68 years. My Mother is heartbroken. The staff at his care center are mourning the loss of a good friend. I can't even articulate the words in my mind that my Daddy is gone. Please post your comments and thoughts at phyllisjames3rd@gmail.com.

I am with you as I have been for 8 years, 9 months and 19 days. Alzheimer has been my constant companion, never far from my mind. At the end my Father could not communicate, move or have any quality of life. I prayed for the end to be peaceful. I prayed to God last night to let his will be done, not mine. When they called me this morning all I could say was Thank You, Jesus for answering my prayer.



Peace be with YOU, Phyllis ♥

Wild and Wonderful

February 10, 2018

December and January were probably the most emotional draining period that we have had in a long time with JW. He had decided that he was not going to eat anymore and of course we all thought that it was going to be the end. Not soo. He continued to sleep 90% of the time and drink all his fluids. Then one day he decided to start eating again. Over the holiday season we lost 3 people at the care center. Mother has decided that she is the cheer leader for the residents in my Father's wing so she carries little trinkets that she can pass out when she makes her rounds. We had bought some prayer rocks with the cross carved in them and when we received them they were so much larger than we anticipated that we decided not to give them to anyone in the care center because we were afraid of them throwing them at other residents. Of course the nursing staff gets concerned if Mother does not come on her usual days and so she has gotten into the habit of calling in to the head nurse. She is afraid that if she is not there he is not going to get fed. I guess that comes with 68 years of marriage. I can notice that she is getting very fragile and she perseveres to push herself to spoil JW even now. I have limited myself to only going on Sunday's now. It is not that I don't want to be with him but I want my time to be with him to be unhurried and peaceful. Even if he is sound asleep when I say "Daddy I am here" he will say "Hello, sweetheart" and go back to sleep. 67 years old and I am still Daddy's girl.

December was an awful month. My medication that I had been on for 8 years for my arthritis stopped working. As a result every joint in my body became inflamed and the pain got to the point that James had to get my Father's walker, cane and toilet set up for me. I could not even walk the 16 steps to the bathroom. I was in too much pain. I can honestly say that it was the first time in 27 years that I stood in the middle of the floor and cried. My insurance has denied me the new medication and we are in the appeal portion of the request. My doctor contacted the manufacture and they are providing me with the medication for 6 months. I have progressed so far into the disease that the generic will not work. All this happened the 2 weeks surrounding Christmas and New Year's. When the kids came for Christmas dinner I could barely walk and I felt so bad. We still had a very good day and at least I got to visit with them. I still want to work until I am 70 and in order to do that I need to be able to walk.

My Father's care giver that we employ to take care of him 3 days during the week has not had a good couple of weeks. She did not feel good 2 weeks ago Sunday and her husband took her into urgent care center. They transported her to St. Joseph's Medical Center. Her heart rate was 39, should have been 65, or there about. They scheduled her for immediate surgery and she had a pacemaker implanted. I told Mother under no circumstances was she going to go over to the care center more than she is  now. She will be going on her regular schedule and that is plenty. Carol will be out 6 weeks so we just have to deal.

Wild and Wonderful is the state logo for West Virginia. My Father's theme of his funeral is going to be that. I decided that in order to incorporate all the cardinal bird things that Mother and I have purchased I will call his eulogy in the program "wild and wonderful." We purchased a beautiful cardinal statuette from "Hamilton Collection" tm and want to put that on the alter. Mother has picked Precious Memories as her theme. I am not sure if a theme is needed but we are going with it. The ladies group usually cooks for the after services meal however I am going to ruffle a few feathers and request that they join the mourners this time. I have arranged for a caterer when the time comes and I want them to support Mother at that time. I don't know why I have JW going first in my mind but I don't really know that answer only GOD does and he is not talking.

Thankful

November 18, 2017

Where in the heck does time go so fast. When I look at my last post I feel like it has only been a few weeks and it has been 2 months. The days pass in a whirl and I can't seem to figure out why I falling asleep on the couch as soon as I get home from work. I did get a cortisone shot in my left foot 2 weeks ago and I couldn't be more satisfied with the results. I have had 0 pain for almost 2 weeks.

Growing old is not for sissy's. Last week I woke up at 2:50am and was unable to lift my head off the pillow. I was having a severe episode of vertigo and had to go to the bathroom. I knew that I could die in my room before James would open the door because I had told him never to open my door unless the house was on fire or someone had passed on. So I rolled out of bed onto the floor and crawled out to the dining room. I knew that when he finished watching his movie he would be going to bed and see me laying in his path. So he calls the ambulance and they take me to the hospital. When they told me what was wrong I did not believe them. Low potassium. What the heck. Who knew that you would feel like you were going to die by not eating banana's.

JW is doing very well. He has been off eating for a couple days a week but I think we figured it out.  He eats a large breakfast at 7:30 am and by lunch he is not that hungry, lunch is at 12:30. Dinner is served at 5:30 pm and he usually eats a good dinner then. He just noticed a red cardinal thermometer that we put outside his room window a year ago and asked me to go get his shotgun so he could shoot that big red bird. He never owned a shotgun in his life so I have no idea where that came from.

On a serious note. I would like to thank Bill Gates for his HUGE donation to the Alzheimer's research organization. 100 million dollars will help for more important testing to learn more about this troubling disease.  Not in my Father's life time but for future generations to help people affected with this disease. I hope that I am still alive to see the first survivor of Alzheimer's.

I still am thankful for every little thing that I have been given to serve the elderly. Believe me the smallest thing that you can give people who live in a care center or nursing home is your time. I see people who have no one come to see them and they may not make any sense but I will sit there and let them ramble on as much as they want. A smile and your attention will go far.

Happy Holiday everyone.

Peace, Phyllis ♥

The pieces of my heart are getting low

September 2, 2017

There has been so much going on that I have lost track of time and space.  I took a bad fall a few weeks ago and believe it or not I hit the back of my head on a plaster wall. I know you are thinking what the hell are you doing girl. I thought that I was OK, just a little stunned. Nope. In the next couple of days after the fall my neck swollen up and ended up pinching a nerve in my neck. So as a result of that I lost the use of my arms and hands. A trip to urgent care, CAT scan, X-rays and lots of crying. Thank goodness James took Mother to the care center to take care of JW.

I finally got a pain management plan from my rheumatologist and NY Spine and Wellness. I am now on a few medications to help control pain. PLUS I have been put on oxygen at night to sleep. Trying to get used to that. I admit that I was slow to come on board with that. The psychological effect is so strong that your mind cannot process all of it.

I am still having to deal with Social Services. They have not approved JW for Medicaid so we can pay the 20% on Dad's bills. At the present time we owe over $80,000. Now keep in mind my Father is 89. No home, no vehicle, no savings, no IRA's, no investments and only his Social Security check. We figured it out and the government is paying OVER 1/4 of a million dollars per year for my Father to have 24 hour care. If I thought home aids would show up and take care of JW I would bring him home and have someone take care of him here. My heart breaks every time I leave and he says I want to go home with you. That is the worse. I keep it together till I get outside his room but believe me the pain is real.

You have no idea what he is thinking in his Alzheimer mind but he does know that he does not want to be where he is. He misses us and I miss him. Mother is doing the best she can. Here she is patting me on the back saying, it will be alright, we are going to be fine. All I know is once you see it you cannot forget it. I have over and over tried to imagine how I would feel if I could not move. I wonder all the time if he is sedated enough so he is not in constant pain. I question my decisions over and over. I did donate 6 of his beautiful paintings to the care center. When I said I would donate paintings from his collection in his studio the assumed that it was from paintings he had collected. No, these are painting that he painted. If I ever figure out how to put picture on here I will put some up.

I am asking for prayers. GOD's will be done. Help me understand.

Thank you so much for all of you that have stuck by me over the years.

Peace ~ Phyllis ♥

Father's Day 2017

June 17, 2017

Sorry I have been gone so long this time. The pity pot was as big as a swimming pool and I have been having a tuff time of it.

JW will have been in the Care Center for 1 year next month and I am having alot of trouble dealing with that.  Mother has been on the decline health wise for the past year and I have been trying to hold up under watching her mind slowly disappearing in front of me and knowing that my Father is deteriorating faster that she is.

We were denied Medicaid for 20% financial aid we needed to pay for the past year at the care center. I reapplied and who knows what will happen. It is not that James and I can't pay for it but it's the principal of the whole thing. When I tell you that I have a huge legal paper box full of paperwork I am not kidding. They want more and more financial information and I have provided most of it twice. Part of the problem was that DSS told me that I blew off a hearing in December 2016 and that is why it was denied. I asked to see a copy of the hearing notice that they said they sent to me and imagine my surprise when they could not produce it. So, they graciously granted me a retry on the hearing so that while I was in front of the Judge she sighed heavily, their lawyer doodled on his legal pad and the DSS employee more or less said, "to bad, so sad, sucks to be you."  I truly am trying to stay optimistic.

I had my foot surgery last month and I can truly say that I understand why people call Dr. Kevorkian to end their life's. The pain level was such that when I tried to take Oxy it made me sick. Then they tried something else, it didn't work either. Finally they gave me something that did not tear my stomach up too bad. Then because I had to go off my arthritis meds for 1 week before and 1 week after every joint in my body was inflamed. Needless to say old age is not for sissy's.

I have been trying to think how my Father must feel not being able to move or even feed himself or get a drink.  As a care giver you try to make their end time as comfortable as possible. Yes, I have increased his day time medication to make him rest better. Yes, I have had his physician put him on stronger night time sleep medication.  Yes, I have a Do Not Resuscitate order in place. I will at the end put him on every medication I can legally have him take to make his cross over easier. I still weep.

We have lost around 6 people on my Father's wing since last July. When we go in and see a name removed from the door to the residents room we know that they have passed or moved to a facility that can take care of more serious medical needs. It affects all of us. You get use to them in the community room. You talk to them whether they can answer you or not. You bring them little stuffed animals that they can hold in their little frail hands and you pray for all of them.

Tomorrow is Father's Day. If you are lucky enough to have a Father with you or someone that you consider a Father figure tell them you love them. Hold on to them and tell how much they have helped you become the person you are today. Buy them posters to hang on their walls if they cannot move. They may still have a crystal clear mind. If you Father is gone still honor him.  Once he is gone, he will be gone forever.

Peace, Phyllis ♥

Can you draw a straight line on wrinkled skin??

May 8, 2017

Every morning when I am getting ready to go to work I put on my make up and try to draw a straight line with eye liner on my wrinkled skin. You would think that at 66 I would learn and give it up. Nope, I put it on, take it off, put it on, take it off, you get the idea. This is what I think my life is starting to feel like.

I am going to have to go into surgery at the end of this month to fix my left foot. When I had surgery to get my right foot fixed 2 years ago I was out of work for quite awhile. This time should only be a week or so. I have bursa's that are connected to my arthritis. The problem is they form on my feet and it makes walking next to impossible. I have a high pain tolerance and I am not kidding. I walked around on my broken ankle all day 3 years ago and only went into the doctor after I woke up the next morning because my leg was black from bruising. Dr. Fred that has taken care of my broken ankle, reconstructed my right foot and now doing my left told me the other day that there are people that say they have a high pain tolerance and then there is you. I had 5 pain pills left from 2 years ago and asked for 7 more and he said I can say with a clear conscious that you do not abuse meds.

JW had to go to the hospital April 11th. He was dehydrated from his cold that he had and so off we went. They called me into the finance office and said "if he is admitted to the hospital and is gone for longer than 1 day you will have to pay $363. a day to hold his room." Excuse me! You are charging the government $3,000. a month for him to stay here (not including meds) and I have to pay you $363. to hold his room. He has a private room and apparently if you want your family member to continue to have all that luxury you need to pay. Or they can move the resident to a semi private room. JW is so anti social that if there was another person in the room with him he would not be happy. He doesn't want to talk to anyone and I suppose he doesn't want anyone talking to him either. If he doesn't want to talk he will just ignore you and let you carry the conservation on your own.

I am not sure if any of you care givers out there have had to dealt with every time the aids move your loved one they scream, swear, cuss everyone from those present in the room all the way up to the pope. Last week end JW decided that he did not want to be changed, straightened out in the bed, clean sheets and covers but he screamed so loud that where I was outside his door it sounded like he was being murdered. Finally I couldn't take it any longer and barged into his room, whether his private parts were covered or not. I cradled his head and said "Daddy stop, I am right here, you are not in danger, and then rubbed the top of his head." He stopped right then and there. I looked at the nurse and said if you rub his head for some reason it calms him down. I was so upset after that episode that I was unsettled for the entire night. You can't help but worry about him being alone, even if there are people all around 24 hours a day. Is he safe, does he eat, does he understand what the heck is going on. When I am walking out the room and he looks at me with those baby-blue eyes I'm lost. I'm starting to cry just talking about it. Then when I talk with other people they tell me that they totally understand and it doesn't get any easier.

I've decided that I am not going to wear make-up any longer...

Peace, Phyllis♥

Just stick your foot out..

April 10, 2017

This past month has been a real bitch. Not only have I had doctor appointments on top of doctor appointments but JW has had a rough month. Even though I have dealt with the emotional roller coaster that has become my daily routine there are still times when I just want to scream and say "I don't want to do this any longer!" It does not help that we have no close family that live near us. My son only lives 9 miles from us but it could be Jupiter for all he cares. He is so consumed with his work that he is there 12 - 14 hours a day. Not so good for a family life. His idea of seeing his son, age 12, is face time on his phone. My daughter-in-law keeps me informed of important stuff but I only see her 2X a year if I am lucky. My grandson has his own agenda and apparently grandparents are not so important at 12. I feel like an amoeba at the bottom of the food chain and we are the last people who get to see them. Oh well, my new little statue that I bought last month is "Be still, and know that I am God" Psalm 46:10. I tend to complain alot out loud if I am not careful. Then I would never see my kids. Oh, and I asked them to go see grandpa and I may as well talk to the wall here in my computer room. Mother told me once that when a son gets married it is totally different than a daughter. It's just you miss your child no matter what and where they go in life. I love my son and his family and just wish I could spend more time with them. There are only so many hours in a day. I suppose everyone's life is theirs to do what they choose. Sometimes it's hard for us to accept everyone does not live like we think they should.

My diagnosis has been confirmed. I have interstitial lung disease. My arthritis is hardening my right lung and I need to learn to live with it. It is a mild case, for now, and I just have to take it easy. Less stress my lung doctor said. He has got to be f'ing kidding me, right. How in the heck do I reduce my stress. I would have to be unconscious to have less stress.

In February New York State issued a new mandate that ALL safety railing have to be removed from residents beds in nursing homes. 3 weeks ago JW got tangled up in the bed railing and half of him went out of bed and the other half did not. I had about 8 calls from anyone and everyone who had any authority in Dad's facility to tell me that all the railings had been removed and he had 2 little foam rubber guards on his bed now. The x-ray company was called in to check him head to toe, all is well. I went in there to say the least and I threw one holy fit. Had James print out the mandate, read the entire thing and I have to say there was not one loop hole. The problem I had was the tiny foam rubber guards were not installed right and it would take JW one good turn and he would be out the bed.  I had most of his furniture moved away from his bed and gave him a 50 - 50 chance that if he did go out he would not hit his head on something. After a couple of days of stamping around and basically making a damn fool of myself I calmed down enough to face the problem head on, logically.  The care center obtained higher "bumper" pads for JW's bed and he seems to be comfortable in them.

His unit had been in quarantine for the last couple of weeks. Some of the residents were displaying symptoms of cold or flu. JW had been fortunate not to get sick since he has been there last July. This time we were not so lucky. He has not felt good for the past week and a half. You know when you are sick and do not want anyone to bother you, well that has been my Dad. He was sick to his stomach and now he is having bowel problems. Mother said that he felt better today and he ate a good lunch. Tomorrow I have an appointment with his medical team and go over his care plan. They do this a couple of times a year and they said there has been a major change in his treatment plan. I am sure that is to do with the new mandate that family members are not going to be allowed to feed their family members unless they are certified in feeding. All care centers are short on help. I think that if a family member comes in to feed the resident the staff are relieved. When we are there the staff peek in once in awhile but they know that we are in with JW and keeping a keen eye on him. Because JW is unable to feed himself we have someone there every day to feed him. So, here we go, another mandate to tie our hands tighter.

I usually do not sleep with a blanket but once in awhile I do get chilly. I end up sticking one foot out the end of the covers to regulate my body heat. I am trying to figure out how I can stick one foot out and regulate my stress.  That would be a good thing.

Happy Spring!!
Enjoy the clean air.

Peace, Phyllis ♥