Thursday, October 25, 2007

Afterthoughts

Thank you to all who were with us through the blog or emails or phone calls. We felt your spirit. Its been about 2 weeks since the funeral and things are winding down here.

I am going to talk about my feelings right now. I am going to be frank and not sugar coat anything.

I know that what we did for my dad was a good thing. People have told me that many times. I know that one day I will feel that way too. But right now I am just feeling a bit numb, I guess. Not sure if that's even the right word. I have moments of relief that its all over and I know my dad is happy with my mom and out of pain and that is the sensible thought and truthful thought.

But then I get the wave of doubt. I worry that maybe I could have done a better job with taking care of him. That I could have cooked him better meals, or managed his pain better at the end. That maybe I made him angry or irritated him during the time that he could not communicate with me. And even though we all said our "goodbyes" and sent him off with our love, I feel there still wasn't closure. My mom passed away in her sleep unexpected and I always felt there was no closure, but even saying "goodbye", I still feel there is no closure.

I just can't feel good about any part of his death. The weird thing is, I think I missed him long before he even passed. When we brought him home on August 13th, and I started caring for him, he was not the man I knew all my life. Its hard to become the parent to your parent. His brain tumor made it so I had walk him through everything. I am so glad that at most times he didn't realize this. There were moments when he did though and those were really tough. He would cry and say he wished he could have gone like my mother did, and he wouldn't wish this on anyone. He would also say that he wished someone would put him in his bed, lock the door and through away the key. Now how do you respond to that? It was really difficult and usually I was alone with him during these conversations. It would just break my heart and I would tell him: "I know its not easy, but we love you and we are going to take care of you. Forget about locking you in a room and thowing away the key, its not gonna happen!"

Even though he was a different person he was still my dad. Now I find I miss that little boy. Its bitter sweet memories of how child like he was . Cute but sad. I had to almost detatch a bit to take care of him. I think about our drives and when I get in the car its really lonely. I haven't done anything yet in his room and I probably won't for a while. I have all his stuff here and I just can't do anything with it right now.

A friend of mine told me: "You never really grow up till you loose your parents." What a true statement. I used to be someones daughter, a child. Now I am not. I am a parent and wife. Being a child is no more for me. So I guess you mourn many things, not just the physical loss of your parents, but the loss of being a child no matter how old you are. There is a submissive comfort when talking to a parent. Someone who can tell you what you need to do and you usually do it or really think about it. A trust you have with no other. So I guess that is a large part of our phsyche that is lost too. Now you have to trust yourself.

I don't know if anyone else has felt these feelings but they are what I am feeling right now. At least a part of my feelings. There is alot more going on that I can't really decipher right now.

Thanks for reading.

Tuesday, October 9, 2007

Funeral Arrangements

Hi Everyone,

Here are the funeral arrangments:

WEISE FUNERAL HOME www.weisefuneralhome.com
7210 Park Avenue
Allen Park, MI 48101
(313) 382-1150
(313) 382-3163 fax

Visitation: Wednesday, October 10th: 5 - 8 PM
Funeral Service: Thursday, October 11th, 2007:
10:30 AM, St. Francis Cabrini Church, Allen Park,
Luncheon
: Please join us for a luncheon following the services.

I will continue to write and post photos for those interested.

Its been a difficult and bumpy journey and its over now for us, but dad's peaceful journey has just begun. Thank you for all the wishes and prayers; they worked because he is out of his pain and reunited with mom.

Monday, October 8, 2007

A drink on Dad


Sunday evening we decided to have a dinner and drink on dad. He always wanted to pay for everything so we let him. After dinner we each talked to dad and told him it was time to go and to be with mom and that he didn't have to worry about anything here. We took care or everything and everything is under control. We each hugged and kissed him and told him our personal message. We then all stood around him and held hands. We blessed him with holy water from Lourdes, that my sister had gotten for my mom and I had it here. We said a prayer.
His breathing became less gurgly and more shallow. At 5:15 this morning he took his last breath and went to be with mom, his brother, his friend Monty and his parents and everyone else waiting for him.

Sunday Night

Dads had a fever again of 101°F‚. We gave him another tylenol supository. He only opened his for a couple of seconds at this time. He hasn't opened his eyes now since we changed his entire bedding this morning.After reading brainhospice.com which has been a wonderful site on helping us out, we decided that alot of dad's symptoms seem to be that he is hanging on.

So we decided to all gather around dad and tell him that it was OK to go. That mom was waiting for him and that he doesn't have to worry about us or anything else. We each hugged him and told him our personal messages. I have some holy water from Lourdes that my Lynne gave my mom, so we blessed him and held hands (Beverly, Lynne, Larry, Jessica and Arnie) and said said the Our Father and Hail Mary.

We also told him that we were having a great dinner on him and a drink afterwards (He always wants to pay for everything!)
As soon as he was read to go it was OK, because that was the plan. He always wants to know what the plan is.

Anyway, its about 1:00 am and he is still hanging in there, with now shallow breathing. His "death rattle" has subsided and hopefully he will relax and let go. We are still administrating his Morphine, steriod, seizere meds. and XanaX cream. We toasted dad and talked about good times on the patio.

I'll post soon.

Sunday, October 7, 2007

Fever

Hi All,

Dad ended up having a pretty good fever friday night. He went into a coma state. We couldn't get him to wake up or respond to us. The hospice nusrse had us crush up aspirin and we had to put it in honey to try and get it down him. He could not swallow. She came to our house shortly after and we opened the comfort box in the fridge. ( Hospice Supplies this but you cant't open it without a nurse). We were able to give him a tylenol supository and she called in for liquid meds. She suspects that he may have a started to become septic and we need to get antibiotics in him immediatley. I had only large pills that I just got from the pharmacy.

Lynne, Arnie, Jessica and Larry arrived that night and we all kept vigil. After getting the anitbiotics in him and the tylenol he seemed more responsive on Saturday. He knew we were there and who we are but he can not speek but maybe a few words. He is in and out of it most of the time and talks to someone alot. (Not us).

Saturday: We seemed to get him stable and sleeping but the pain was getting worse for him. SInce he can't take pills we had nothing to give him. Every time he had to go to the bathroom he nearly hit the ceiling and wanted to pull out the cathater. (He asked me to pull it out!)The hospice nurse had us start to give him the morphine in the comfort box. We started on that at .25ml every 4 hours but that seemed to do absolutely nothing. His pain was really bad. We called her back and she increased it to .5 ml and we wanted to get rid of the catheter. We were trying to eliminate the possible source of pain for him. It could be from the UTI and having the catheter in him, or it could be from the kidney stones or anywhere else, he can't tell us. Any way she talked us through removing it in which is fell out pretty easy.

Sunday Morning:We now have his comfort level pretty stable. He still winces some with pain but no where near what it was on Saturday and Friday. We are keeping in depends now and which I think is better for him, comfort wise. I think his whole body hurts from head to toe. We have to move him very gently and slowly. He is sleeping most of the time now.

Hospice nurse is on here way to help us change his bedding and gown. I will update more later.

PS. Thank You to all who have been reading and sending messages! Knowing the support of our friends is out there really helps!

Thursday, October 4, 2007

Pins & Needles!

Sorry I haven't posted for a couple of days. Its been really rough here since dad got home. He is having a lot of pain and we are round the clock trying to keep him comfortable.

Condition:
Very weak, and sleeping even more. He is having alot of pain urinating and having major cramping going on. He is now on 2 congestion patches, calming cream, xanax, and norco for pain, along with seizer meds and nebulizer and probably more, I just don't remember right now.

OK, my first advice to anyone who may go through this is to really hold on tight. The first days are really, really difficult. (Last night I didn't think I could do this! I had a breakdown! I am doing better now.)

Dad was really glad to get home and that first evening wasn't too bad. The next day, which was yesterday, I was alone with him. He felt he was going to have a bowel movement and he is bed ridden and cannont sit up, let alone stand to put him on the commode. So being by myself, and not knowing how to do anything yet was not good. The hospital basically wrapped him up in his bedding and brought him home and plopped him in the bed. The sheet that was under him was stretchy so I couldn't use it to help me roll him over along with the fact that I don't even know how to do that. I just watched them in the hospital. Anyway, I was really nervouse, so I did call Hospice immediatley. I tried to help him in mean time but instead my moving him hurt him so I stopped. By the time hospice got there he said he didn't have to go, which is not unusual in his condition.

Friday Oct. 5th.

We finally got Hospice to get him an antibiotic for his most likely UTI. He has blood in his urine and cries in pain everytime he goes. Its been very difficult here for dad and everyone else because of this pain. He also has constant urges to go and can't. The catheter has been changed to a foley and it really makes this situation much worse. We have to keep it in though and hopefully the anitbiotics and pain meds will work. If its not a UTI, most likely the pain is from his kidney stones, which then we will need a better pain med. THey also prescribed an anti spasm meditication for his bowel. THat could be source of his severe cramping. Right now he is sleeping because of the meds, but at least he is peaceful and hopefully not in pain. Its like he sleeps with his eyes open, (hallucinating?) though and still is pretty congested thoough. He takes big intervales like sleep apnea with his breathing.

The private nurse aid I hired - Kelly - has been wonderful. I would highly recommend that to anyone. There is so much to be done that you really need as many qualified people as possible. ALso my dad is not a small man. At 5 '11 and last weigh in of 171, its very difficult to maneuver him on your own.

Larry, my brother, is coming in tonight and staying to help me....THANK GOD!!!!! We really, really need him and my dad has been asking for him. Posting mey be sporatic now.

Tuesday, October 2, 2007

Post 04 Dad's Home!!!!

Status: Dad was much less congested this morning because Hospice put a patch on his neck to help dry it up! What an incredible difference. He ate so much more this morning and his breathing was much quieter! The hospital does not use these patches. He is still very very weak and sleeping alot, though yesterday he stayed awake for almost 4 hours! He has not gotten out of his bed for 2 days now.

So far Hospice 2, hospital 0.

Word of Warning: If you have someone in a similar situation, be sure to bug them at the hospital what their plans are! When we arrived yesterday morning the hospital discharged my father without even telling us and they were ready to ship him to the first available bed in a nursing home. Thank God we signed on with Hospice and they were able to make his status non movable and the hospital had to keep him there till we figured out what we wanted to do! So just be sure you know the time line with the hospital and get a plan in place or they will move your loved one out! These are all really hard decisions and it seemed the hospital just didn't care.

Got him home....

This morning on the way to the hospital I called the hospice nurse to let her know our decision to bring dad home. Wow, they are fast. By 3:00 that afternoon, I had a hospital bed, oxygen, bedside comode, bed tray, walker and everything else I needed. My dad was home by 4:30 and comfy in his new bed in the living room! He was soooo happy when we told him he was going home.

Toonsis our cat was waiting for him in his new bed and has been sleeping with him most of the time. My dad was really happy to see him and that he was sleeping with him. Doug and I played and sang about 8 songs for him and he really liked that. We kept asking him if he was tired yet and he kept saying "no, more music"! My sister Lynne and brother in law, Arnie helped with getting things set up and stayed to visit. Our Hospice nurse will be visiting tomarrow morning.

I am a bit nervous still, but I am sure things will settle in. I am going to sleep tonight on the couch in the living room, just because it is the first night he is home and if he does wake and get confuse I am in the same room.

Surprize Visiting Nurse:


Lynne decided to start calling on some private nurse agencies to help me out while I was at home getting ready for dad. The first one she called ended up being run by an old friend of mine,Kim, that I haven't talked to in over a year. I kept saying all week that I need to call her for advice ( she is a nurse and experienced with geriatric care) and fate would have it that she is now an administrator of the facility we were calling on!!!! Long story short, she came over tonight to visit and help if we needed anything. We are definitely going to use her facility and I feel so good knowing that Kim is involved. She is a wonderful friend and nurse.

Monday, October 1, 2007

Post 03 10•01•07 MRI info/ Calling Hospice


We finally got some information on the last MRI taken. The tumor has grown to 4.9 cm X 2.8 cm. There is some adema (swelling) around it and possible bleeding inside the tumor itself. Apparently the Cyberknife radiation did not do much. We were told that a glioma tumor (which is what they are calling it) does not respond very well to radiation. So more radiation would not be something recommended by the oncology radiologist.

Condition:My dad seems to be getting weaker and weaker. Today he did not even get out of bed. They usually get him out of bed and sit him in a chair to change his bedding and today he couldn't do that.
He is very congested. He always had a bit of a rattle due to his ashma, but now he is really rattling loud. The hospital has also put him on oxygen. His sugar is also elevated due to steriod. They stopped giving him the decadron and how he is taking prednisone. (Steriods) He did eat fairly well though. He is still very determined to eat on his own and I have to force myself to not help him. By the time he is done eating he is pretty exhausted! They have increased his zanax to .5 MG. This has been a big help with his anxiety. He has been in a pretty relaxed mood the last couple of days.

What to do next.....

After hours of discussing, thinking, and no sleep, we decided it was time to call Hospice in. It was a really hard decision for us to make. We know that there is no cure for what he has and comfort is what we need to concentrate on for him but it is such a painful moment when you sign the papers. I know we are not giving up but it just seems that way. Its really hard to not be selfish and keep poking and prodding him for some glimmer of hope that he will recover from this. But we realize its not about us and our feelings, its about him, his feelings, his dignity and what he wants. He is tired and miserable in the hospital and just wants to go home. So after careful considerations of home care vs. nursing home care we came to the agreement that we will bring my dad home. Hospice will set up everything in my home for me to care for my dad and we will hire a private nurse to help. Lynne, Arnie, Doug and Jessica all agreed to help. I am very scared but my gut feeling tells me this is the right thing to do. We were very close to choosing a nursing home, and nothing against nursing homes, but I just didn't feel comfortable putting him in one. I know eventually he may not know the difference, but I know I will and my family will. So the next step is getting him home...

Friday, September 28, 2007

Post 02: 9•28•07 Somethings Wrong

Well, right now we are here in Huron Valley Hospital. Things were going OK, last week, dad was doing OK, as to be expected. He could walk very slow and very slowly get up the 5 stairs to his bedroom. He has to really rest afterward though. Things like taking a shower really wears him out, but that is the norm for the time being. He has a hard time with short term memory but managed to make sense and get his message across without to much frustration.

We started to notice on Monday that he was getting really, really weak. He was in OK spirits and wanted to go out to eat. So my husband, my sister, myself and my dad went to eat. We did alot of talking in the car. This was the first time we noticed that loud talking or commotion really upset him. At the restaraunt I helped him like I do at home, and didn't realize how much this upset him. He began to act very "cocky" and aggressive. At this point we knew something was wrong and decided it was time to start giving him the Zanax the doctors prescribed.
We had a pulmanary apt. the next day and his weigh in was 171! We were shocked that he dropped close to 15 pounds in 2 weeks or so.

The next couple of days his mood had not changed and he got weaker and weaker.
We took him to emergency on Wed. and they did discover that he has a bladder/kidney infection. We are not sure if his outburst was due to the infection or not. He is here in the hospital and they are adminstering antibiotics. He is very weak and can't walk on his own.

He has kidney stones and is scheduled to have them blasted on Monday. They put a stent in him a few weeks ago and this could be the source of the infection. At this point they still have him scheduled for the surgery, but it depends on his mental and physical state. If he is still overly confused they do not like to put you under. He needs to stay on Zanax because his is still very agitated.

Post 01: Let Me Explain...

Hi Family and Friends,

I chose to keep everyone updated through this blog, This way you can check up on things in your own time and read this at your leisure. Also I have been reading many blogs from people going through the same thing and found it very helpful that I felt I needed to pass on my experiences to hopefully help someone else.

This is all so new to me, being a caregiver and blogging! His illness is so out of our hands that its is very hard to feel in control of anything, including our own emotions. So I felt if I do this I can at least be some sort of control by passing on his progress to you and possibly being support to someone else. I am not sure if that makes any sense, I just want to help in some way. It is so difficult not being able to make it all better for my dad and it makes me feel very small at times.

OK, enough about me.

A little history:

My dad had 2 mini strokes in May of 2007. The strokes affected his speech and he suffered from aphasia. He also lost his periphial vision in his right eye. Nothing else seemed to be affected and the aphasia went away pretty fast. In the first week of August 2007 he suffered another mini stroke that the docs now thought might be a siezer. He had another MRI and a large 4.5 cm mass was now discovered on his brain. My brother was living with my dad at the time in Florida and as soon as we found out this information, my sister and I flew down there immediatly. The tumor is in a place that is basically inoperable. He would have been paralyized in half of his body and being 82, this would make life quality very hard.

My dad chose Cyberknife radiation. It worked out great that there was an opening in the next couple of days and we could get him in. After that we flew him back up to Michigan so he could live with me. He needs someone with him 24/7 and my brother and sister work full time.

He was adjusting pretty well in my house and we had a good routine going for the next 7 weeks. I did notice he was getting weaker and his weight was going down. Before any of this he weighted 200lbs, and 2 weeks ago he weighted 186