Family dinners

We had our weekly family dinner Sunday night. It began when we would watch the Sopranos together. It is now an occasion that had dropped by the wayside as we became increasingly more busy in our lives. It is incredibly difficult to always get nine people together on a regular basis on a given (Sunday) night. Part of the reason the family night began to vanish is due to the fact that we are usually gone twice a month during the "winter" months because we go to the little hill country place. Even in the other months, we are gone once a month. When Dad was alive, K and I would go to the assisted living to visit him on Sunday and when I got home I would usually be emotionally exhausted. The last thing I wanted to do was to fix a big meal.
At the funeral, B was deeply moved. He is the one who was so stoic about Dad’s passing. He wrote a poem for K and me. It was saying that Dad would be "born again into a new place."
B said he was excited for him to be going to heaven. I believe when he went to the coffin, B realized he could have had a better relationship with his grandfather, even though in these last years Dad was not his same grandfather.
The old saying: a daughter is a daughter all of her live, but a son is a son until he takes a wife is alive and well in our family - even the extended family. G was closer to my family. In fact he was proud to tell people it was a privilege to have known his father in law for 38 years. S is closer to us than his family - or at least some. My brother in law is closer to M’s family. My niece’s husband is closer to her family. Some of this has to do with location. The sons in law live closer to the maternal side of the union. Well, so it goes with B. He has been closer to C’s family after they married. Part of that is they live with C’s mother. This is a long explanation for his recent desire to be with us once a week again.
It is nice to have the family together again. It IS easier because I am not so emotionally drained. Right now it can be every weekend because Simone has just gotten her first heartworm treatment (if you forgot she is our rescue boxer). She can’t travel for 4 weeks. But to sit and share a meal and share our time is so rewarding. It is a way to keep the family connected. That is important. It gives the kids, Lady Bug, Monkey Boy, and M a real sense of being connected and having a foundation. I pray it can continue.

Memories

Memories come flooding back with various and often unusual prompts. I know that I am still in the early stages of grieving Dad’s death. This final fact that now even the body is not here. While watching TV, there was a commercial for better fitting "protective underwear." That made remember that I won’t have to buy that item - at least for a while. I remember D telling me how she was relieved that when her mother died she wouldn’t have to buy the adult diapers anymore. Strange how buying that item can make you feel. In this age the emphasis is youth and the young; you can really find yourself caught up in trying not to grow old. You feel that everyone in the store is looking at your purchase while thinking "that poor old woman - no control over her body functions." One would think I would get over this way of thinking, but, alas, no.

I was also reminded on Sunday that Dad was gone. When we were coming home from church I was reflecting on how I was going to spend the rest of the day when I realized that the Sunday visit with Dad wasn’t going to happen that afternoon. Then G said he also remembered that I wouldn’t be going. K told me Lady Bug asked her if we were going to visit Grandpa. Even the little ones remember.

I know that I will never forget he is gone. That is the way it is supposed to be. I am a Christian, and I believe in the after life, but, at least for right now, he lives in our hearts. That is the way it should be.

Details to attend

Fool that I was thinking I wouldn't have to do a final reporting to the court, I find myself once again finding and arranging receipts for all the expenses I have incurred taking care of Dad. I have spent two years holding on to every little scrap of receipt to show the court that I wasn't buying something for myself.

This is another example of how one can be punished for the actions of others. I am fully aware that there have been guardians out there that use the estate of their charge for personal benefit. This is almost comical to me in my case because the money would be mine after his death anyway. I am the only living survivor for one thing, and I am the only one names in his will.

When I signed on to be his guardian, I was only looking to protect his investments because I was seeing some things that just didn't add up. I will continue to be cloudy on this point because I have no proof that there were things that were amiss, but there was something going on. I went into this guardianship being very naive. I didn't know I would have to report to the court every year. That incurs another attorney fee. I didn't know there would be a $3000 for the bond on me - every year. I just didn't know there would be so many expenses with this whole thing.

If I had waited, I was his power of attorney, but V was first. I would have had to get her deemed incompetent to act for him if I wanted to really protect him. That would have been a terrible thing to do. The way I did it could be explained without really getting nasty.

My first shock was the second year of accounting. My instructions when I began were to treat his monies as if they were my own in taking care of them. He had several certificates of deposit that were coming due. The new interest rates were horrible. I began looking for what would be a safe investment with a higher yield. I found two annunities. Guess what! The court didn't like annunities. They thought that annunities were not a safe investment. So the CDs have just rolled over since then, except for one time I found a long term CD that paid a higher percent.

I was really hoping that I wouldn't have to get this accounting together again. I'm getting better at it though. I have learned to be much more organized in record keeping - even though I had lost my very own check book for about three weeks. I guess you can try to teach an old dog new tricks, but there is still backsliding that happens!

Alzheimers

Just another thought about that horrible disease. It is a strange disease. Not all those afflicted progress the same at all. My daughter in law's grandfather also died from it. He turned mean at the end. He would lock his wife out of the house and often hit her with the broom. My dad stayed his sweet self until the end. He would, if possible, smile when asked.

I really have empathy for those who have loved ones with this disease. It is so sad to see your loved one slowly disappear.

Dad's funeral

Thinking that since my dad had to foresight to plan his funeral and prepay the same, handling the specifics of the funeral would be easy. Not. At. All. The entire ordeal was a nightmare.
Even though his death was certainly not a surprise, his being 93 was a great factor , when death does ultimately comes it is a very emotional time. We were staying at the little place in the hill country, and came into San Antonio on Monday morning to finalize the funeral and bring his clothing. We had set the funeral date for noon on Wednesday over the phone on Saturday so the family would be able to get there and return home easily. I should have known something was amiss when they kept referring to Dad by another name. They switched two letters which gave him another very common German name.
We sat down with the funeral director to go down the list of things that were "required" or were "expected" with a funeral. I knew there would be a fee to bring the body to San Antonio, but the fees added up to an additional $875. Well, OK. I wanted Dad to have the best and what he wanted. Then I got to thinking about the $210 fee for the motorcycle escort to the cemetery. On the original contract, that was to be included. Another thing that was listed was funeral cards for $20. I knew it was going to be a very small affair, at best. Why did we need them? Everyone who would attend would know all the information. But I still wanted things to be good. I didn’t know that was only the beginning of the ordeal.
We then were told we had to go to the cemetery to sign papers that would authorize them opening the crypt and putting him in. That was the beginning of the end. They had no records of Dad. They had the other name, but not his. Fortunately I had the deed, and after a few moments they were able to find the information. The only problem, they already had all the funerals they could handle on Wednesday.
One role of the funeral director is to call the cemetery to let them know they had a coffin coming and when. The cemetery claimed they got no such call. They did, however, have the other name on the board. I know that because they said the other name. Since we had not contacted them, they did not reserve a spot. Now I have the immediate family coming from Houston. They have made arrangements at work and all. I have V’s son coming from California. There would be no placing in the crypt. The cemetery person called the funeral director to tell him that it couldn’t happen. He asked to talk to me. He asked if we couldn’t put the funeral off until Thursday! He knew the situation, but still had the nerve to ask that!
I dissolved into tears. I couldn’t bear up any longer. Finally, the cemetery said they could put him into the tomb at 3. We decided that would have to do. I knew we couldn’t be there, and my son was going to drive back to Houston that afternoon. We were in a quandary. The cemetery person told us that only the funeral director had to be there. I didn’t like this, but what was I going to do? The family had made arrangements.
In the meantime I called Dad’s Pastor. He was out to lunch. I called two hours later - he was still out to lunch. The church finally called me three and a half hours later. He could do the service. One more worry line for me though.
When I called my daughter, she was very upset. She thought we should be there at the placement into the tomb. I tried to explain to her that was the worst part for me anyway. There was no pleasing her. I just let it go.
Tuesday was a fairly pleasant day. I thought everything was covered. What a fool I was. I was in blissful ignorance. I wish I could have stayed there.
Wednesday we go into town. I am so upset with the funeral director, I waited in the car for the time to get closer to the funeral time so I didn’t have talk to him. I am beginning my letter of complaint to the funeral home. He comes out to the car and begins to explain that the cemetery should hire more people. HIS cemetery makes allowances. Why couldn’t the one we were going to do the same?
About the time we get ready to go in, I notice the two police escorts. What are they escorting? There will be no procession.
My cell phone rings. My son is lost. It takes him an hour to get to the mortuirary. The tension is rising.
There is only the family at the funeral. Me, G, our two children and spouses, G’s brother and sister in law, G’s parents, and V’s son. I know Dad had been gone from San Antonio for three plus years, and I know he outlived most of his friends, but this was unreal. I couldn’t believe no one else was there. I felt like such a failure. I couldn’t even pull off a pre-paid, pre-planned funeral.
I paid for an obituary for Tuesday’s paper. It was not there! It was not in Wednesday’s paper. I couldn’t believe I spent about $150 for something that never appeared. Finally on Thursday night, K called me to tell me that her mother in law found it on Thursday. What good does that do? If people wanted to come to the funeral, it was too late. If they wanted to express condolences, they have no address. That also explains why there was no others in attendance at the funeral.
So I had to deal with the grief of my dad’s passing, the discontent caused by not having the procession to the cemetery, and the fact that the obituary never ran as it should have. I always felt dealing with funeral directors was detestable, but now I really feel that way. They prey on people when they are at their most vulnerable. I plan to get as many details of my funeral nailed down as I can, and let my loved ones know that if there are the same type of problems they should not take it personally. I’m gone and won’t know about it. Let it go. Now if I could do that now . . .

The end came

My dad died on January 13. It was most certainly expected. I was fully supported by hospice. I was out of town when the end came, but the social worker helped me to see that it would not make a difference if I were there or not. I was not. We went to the hill country place. G wanted to hunt that last weekend and we left in such a rush we needed to check on the place.

As we were driving through San Antonio, I got to remembering Dad's last trip out. G said that would be the last time Dad saw San Antonio, and it was. I was thinking about Dad so as we were going through. At 4:03 pm I got the call from the social worker. I just wish we had made it through town.

But Dad is at peace now. He is no longer trying to figure out where he is and who people are. I miss him terribly.

Today was Lady Bug's birthday party. As we were coming home, I told G I wondered if I would ever get over the bit of anxiety I felt when we had been away. The anxiety that there would be a message that Dad had fallen again, or that he had taken ill. I think that will remain for a long time.

I wish his funeral would have gone the way he had planned it. I'll tell you about that later when we have more time together.

On hold

It is a sad fact that my entire world is wrapped up in this waiting. Our lives are on hold as we wait for the end of a life. I know he wouldn't want us to live this way, but this is the reality of our lives - just waiting. The waiting then brings more time to second guess things we have done - decisions we have made.

I still second guess myself about the feeding tube while everyone I discuss it with (health professionals all) have told me it was absolutely the right thing. Even as I wrote specific advanced directives for myself I saw I was doing the right thing. I was specific because I don't want my agents to doubt it is what I wanted.

I am now feeling some quilt because we will be going to the hill country place today. I know there is no difference I can make here. I will be closer San Antonio there than here. But I feel as though I shouldn't get away. Perhaps I feel I shouldn't do anything that would bring me pleasure.

Yesterday while my son took Dad's dresser and night stand to donate it to Habitat for Humanity, I stayed back in his room at the assisted living facility. I thought back on all those days he stayed there. I remembered how miserable he was. Then I started remembering the good things of his life. In 93 years there were by far more good times than miserable. I hope as the days go on I will be able to focus on the good days instead of the bad - especially the last two weeks.

May you only remember the good days with your loved ones.

Time is still standing still so to speak. I continue to wake at 1:45 am thinking the phone rang with "the" news. Nothing has really happened. Yesterday his pulse seemed to be slower and weaker. I think the word is thread.

I am struck with the similarity between birth and imminent death. We, as mere humans, are not allowed to know the exact date or time. We know what the outcome will be, but it is not for our planning. It will happen when it happens. And while some births can be arranged, death cannot.

It was January, five years ago, when we were huddled in the house at the lake - the one without good insulation - waiting for the birth of Lady Bug while freezing. The difference was the outcome would be joyous. An new, precious life would be the result.

This January we are faced with the loss of a loved one. Even though he has been leaving us little by little, this is the final loss. We are dealing with the suffering - our suffering. The social worker and I were talking yesterday and I said I couldn't stand to see him suffer. She asked me if I really thought he was suffering, or was it that we were placing our suffering on him. I think we are placing our suffering on him. He is sedated. His breathing, while still rapid, don't seem to be a struggle. He is on morphine, and that does relax him. We living think that because he isn't taking anything by mouth, then he is miserable. Not true. We have all experienced toddlers who refuse to eat. Their body doesn't need it. The body makes that decision. His body has made that decision. Like it or not, we have to live with it.

This, like Lady Bugs' birth, has humbled me. Peace be with you.

Waiting still

While we are still waiting, I can see that hospice had been a great benefit in less than twenty-four hours. When I went in yesterday, Dad's breathing was much less labored. They ordered a patch that would be placed behind his ear that lessened the secretions so that there was not as much mucus as previously been there. He seemed to be so much more at peace.

His death is still not an easy one, so I puts me back into the arms of guilt. I keep asking it I have reacted properly. Have I made the right decisions? The pneumonia is getting worse even with the antibiotics and the breathing treatments every six hours. The dementia is not going away. Even if we were able to stop the kidneys from failing and kill off the pneumonia, he would be bed ridden. He has been in bed too many days. He is probably a "silent" aspirators, so the pneumonia will be a constant threat. He has not been happy for several years. He somehow knows that something is not right. He is aware that is doesn't remember many things, and was already retreating into more sleep than normal to get away from social situations.

I'll be meeting with the social worker from hospice later today. I am looking forward to the meeting. She is good at what she does.

I really do hate praying for Dad's death. Death will be a blessing when it comes. Hospice has been such a good thing for us all. That is one decision I do not regret making. Later today I will be writing up a very specific set of advanced directives so that who ever I name will not have the same questions that I have.

Peace be with you.

Hospice

Dad was admitted into hospice care yesterday. He will remain in the hospital because his oxygen saturation is only 92% on 100% oxygen. His pneumonia has gotten worse, and he has not eaten anything in over a week. Hospice will make sure that he is more comfortable by getting the morphine administered on a regular basis. The nurse on duty yesterday was hesitant to administer it.

I emailed V's son (who is technically my step brother), but he still doesn't understand this situation is terminal. His response was to be sure to give him clear liquids and make sure he has a good pulmonologist. I guess men are like this. I was discussing that very fact with the hospice nurses yesterday. When V was comatose, R didn't believe it. We had to put it simply to him - if you want to see her alive you have to come NOW. So I don't take his response negatively. That's just the way he is.

The will to live is certainly something. I cannot believe Dad is still with he. His respiration is so rapid, as is his heartbeat. I cannot believe he has the reserves.

I can admit this now. My ex-pastor has shown me it's OK. I am really angry with God right now. I shouldn't have to pray for Dad's death. He is suffering so much. No child should have to pray for their parent's death, and here I am two for two. My mom was suffering from her cancer so much all those years ago, I prayed for her release. She did - that night. I felt so much quilt after that. I wish God would step in now.

The wait continues

Today marks day twelve of Dad's hospital stay. I cannot believe he is still hanging on - even though it is really by a thread. His respiration rate is up to about thirty six now. He cannot take anything by mouth. When I was there yesterday, I requested he get something to easy his discomfort. It only took about ten minutes for the nurse to contact the doctor and got an order for morphine. It almost immediately eased his breathing, and he face was more relaxed.

I am so sad that he is lingering like this. I don't want him to suffer. It is killing me and my daughter to see him in such a condition.

I never thought this would be as difficult as it is. Even though I have said so many goodbyes as the dementia has progressed, this final one is so hard.

The dye is cast

I spoke with the assisted living facility administrator yesterday. Dad's condition precludes his returning there. So now the place for him to go is to a nursing home. I called the hospice social worker to get some ideas, then had his primary doctor call me. My next step is to talk to the social worker at the hospital to facilitate the transfer.

While all of this is extremely hard, I have such support from my family. Those close and those in the extended family comfort me and assure me that I have done the right things so far. The feeding tube situation was one that really was getting me down, but everyone I speak to about it assures me that it is the right decision. I suppose the primary doctor sounded like I should put it in because he is all about keeping Dad alive. The problem with that is we can't fix the real problem with Dad. He has dementia, and that can't be changed by a feeding tube.

So we continue on. I had my "talk" with him yesterday. There was only the two of us in the room. I assured him how much I love him, but if he wanted to go, he should. All these things that sound so easy when you are not in the moment are not in reality. They take their toll on me. I'm addressing the physical weariness, but the emotional part will be with me for a long time.

We're on track

Yesterday I was able to speak to the hospice social worker. She is an angel on earth! After visiting with her, I no longer felt the huge burden of guilt. She was adamant that there should be no feeding tube. In her experience, they cause more trouble that they are worth. She also confirmed my fear - once it is in place, it will stay there. She explained that my dad's body is doing the natural thing. It wants and needs no more food. It is finished.

I also got to be present when the speech therapists came in to do the swallow evaluation. It was rather inconclusive. I vetoed the test being done in x-ray. He couldn't cooperate. They also didn't believe in the feeding tube.

I feel better about the situation today than I have. My guilt is ebbing to some extent. I would like to say that I won't grieve his death. That is not the fact. I know that his death will be a release for him. He looks so lost - so scared. I know that his life no longer has the meaning it did several months ago. His mind is not there. He really has nothing to go to. He doesn't know us. The look on his face and in his eyes tears my heart out. For these reasons, I pray for the end, but it still hurts.

But today I am armed with specific questions for his primary physician. I know that the insurance companies involved also are going to have some specific questions soon. Let's face it - they are in business for the money, and there is a serious drain of that right now. But we will see what happens tomorrow.

Still waiting

I finally got to speak with the doctor last night. I got the idea the doctor was pushing for a feeding tube for Dad. It is so tempting. When I first realized that I was his Power of Attorney, I didn't think it would be like this. I never thought I would be watching him slowly starve to death.

The speech therapist came in while we were there this morning to do the swallow test. It was inconclusive. She said he could be taken to x-ray and offered several things to drink and eat to determine swallowing. I turned it down. He won't/can't cooperate with them.

I think he has given up. I used to see some hint of recognition when he saw me. There is none now. He looks so lost. I really don't think he knows who I am anymore. I knew this would happen at some point. I just didn't think it would all happen at once like this.

At an age of 93, 4 months, 8 days, it is obvious there will be an end to his life. His mind has been slowly dying for 4 years. Now there is the death of the mind as well as the body. This is a death I have the ability to delay. I can't. I cannot sentence him to more days of being lost and unhappy.

I don't know what the future brings. I meet with hospice this afternoon. I would love for this meeting to bring me some solace. I don't count on it. My guilt is there. It is a living thing. It keeps telling me how horrible I am for not having a feeding tube inserted. I have to remind myself that I wouldn't want to live the way he is right now. I want to run away from all this. I don't want to go to the hospital. I don't want to sit there watching him die. But I have to. God, being an adult really sucks.

Waiting

December 29th we were at the hill country house when we got the call from my son. Dad was going to the ER with breathing problems. He was admitted at 4 am on the 30th. We were on the way home later that morning. When we got to the hospital, he was diagnosed with terrible pneumonia and a slight heart attack. The pulmonary doctor did not give him a good prognosis.

It is now the 3rd. He has responded to the antibiotics, but we still don't know the future.