Making the Move

For a long time now I have been trying to keep my blog postings on the upbeat and happy side.  

I try to avoid political ranting and raving.  

I try mightily to keep my bitching to a minimum (not always successful.)

I try to not get too sad (with the notable exception of the recent death of my Mother this past September)

However, there has been a constant nagging situation just behind the facade of my happiness that I present on this blog on an almost daily basis.  And that situation is the rapid deterioration of mental and physical health of my longtime friend (51 years this January 27th) who shall remain nameless out of respect for his privacy.  Those who know me personally know who I'm talking about.  

My Friend lives with his longtime partner in a doublewide on 22 wooded acres outside of Georgetown, DE.  I always assumed that his partner, a nurse, would take care of my Friend.  However, since his partner retired from his nursing job last year, his mental health has deteriorated even more rapidly than my Friend.  

For the past month I've been trying to teach them how to use simple functions like the computer only to have my Friend's partner call me yesterday and tell me "I don't even know now to turn the computer on."  He can't even perform a simple function like turning on his TV with a remote control. 

My Friend has lost most if not all of his cognitive abilities, although he tries hard to hide it.  They are both very forgetful.  Now his partner is losing his cognitive abilities also.  


When they panic because a renewal notice comes in from Sam's Club, I know it's time to act.


But what to do?  I'm not a family member.  And to be perfectly truthful, I'm not a caregiver type.  It just isn't my personality.  During my Mother's long descent into her mental and physical shut down, both of my brothers took care of her.  They did an excellent job.  I am proud of them.  But I felt guilt because I didn't do more myself.  I'm in the same situation now.  


I cannot escape the feeling that I have a responsibility to do something.  My Friend is the reason I moved to Delaware.  He is  one of my longest, and oldest living friend except for some former classmates I still have as friends.  Although we cannot share our life as we did before when he had his mental facilities about him, I still feel a responsibility to do something.


Today I did something.  I called my Friend to ask him for his nephew's phone number.  I had never talked to his nephew before but I felt it was time to notify a family member of my Friend's situation.  The excuse I gave to my Friend for asking him for his nephew's phone number was I needed a number of one of his family members in case either one of them was in an accident.  He fell for my excuse.


I called his nephew.  His nephew knew who I was.  This was a good beginning. 


I informed my Friend's nephew about my concern and asked him if he was aware of his uncle's deteriorating mental and physical state.  He said he was.  He said his mother (my friend's older sister) has the same situation:  the onset of dementia and Parkinson's disease.  I was relieved, I didn't have to convince him.


I told my Friend's nephew that I would continue to monitor the situation and inform him of any change for the worse (which will eventually happen.)  I remember what my brother said when my Mom started to go downhill.  He said "Ronnie, I don't want to make you feel bad but it's not going to get any better.  It only gets worse over time."  And he was right.  He should know, he is the care pastor of his church.  My Friend is not going to get better.  It's not a question of if but a question of when.


We exchanged phone numbers.  I sent e-mails to members of my Friend's church who are also helping both of them with the increasingly daily crises of their day to day living functions.  


We all want to keep my Friend and his partner in their home, living on their own as long as possible.  But we have to face the inevitable.  At some point one or both of them will have to go into some kind of assisted care facility.  


That is a day I am dreading.  


This is my Friend.

Me (the Wolfman) and my Friend (Frankenstein) in better times. 

Philadelphia, Kater Street Gay Community Center Halloween Celebration 1980

The Dog Days of Summer

The days are getting shorter. In a few short weeks, summer 2009 will end. Another year, another summer, another season will be over. The bluebirds have already gone. Most of the Purple Martins have departed for destinations unknown. A few have returned at the end of the day of nest on top of their summer home out in the back yard. A nest of young sparrows is in one of the Purple Martins apartments. Yes, I relented and finally let one sparrow couple raise their young in the Purple Martin house. They persisted all summer in building their nest and laying their eggs and I was just as persistent in getting rid of the eggs before they hatched. I felt guilty every time I did it but I had to make room for the Purple Martin young. Now that most of them are gone, I have relented and let them raise at least one batch. I know it's not logical but maybe it will make up for all those sparrow eggs that I tossed earlier this summer.

Tomorrow I was supposed to go to a Gouge family reunion near Oxford, Pennsylvania and the Nottingham Park. I sent my regrets. I’m just not into traveling long distances these days, especially to a destination I’m not sure how to get to. I especially don’t relish traveling on a hot summer day on highways clogged with weekend traffic. It’s just not my thing. I would love to visit my Gouge relatives, take pictures and update family trees but I will have to depend on my cousin Laura for that information. I get enough of the clogged highways right here in lower Delaware. Ironically, we live right next to Route 1. The road I would have to travel to Nottingham Park near Oxford, PA is also Route 1. It is a different Route 1. A Pennsylvania Route 1 versus a Delaware Route 1. When I lived in Pennsylvania another main road was Route 30. You guessed it. One of the main roads near here is also a Route 30. A totally different Route 30.

Route 30, that brings to mind our visit this morning to our friend who lives near Georgetown, Delaware in his double-wide trailer on 22 acres of wooded land. As I mentioned in an earlier blog, my longtime friend was informed last week that he had the early stages of dementia. He called it “partial dementia” as if it would make it less serious. But, to my mind, "partial dementia" is like being "partially pregnant." Either you are or you're not. A woman may be in denial about her pregnancy but each day she gets bigger. Our friend is still somewhat in denial about his problem, but each day he fades a little more.

Our friend lives near Route 30, Delaware. Earlier this week he had a security system installed in his mobile home. He has already been robbed once by a home invader and he lives in fear of his neighbor who is encroaching upon his land. He is now a prisoner in his own home. Because of his “partial dementia”, he has difficulty in understanding and operating his new security system. He can’t sleep at night because he is afraid of his neighbor after that neighbor warned him that he shouldn’t go back to where their properties border one another. He is concerned over the firearms that his neighbor possesses. We have talked to him about notifying the police that he was threatened by his neighbor but he is afraid to do so. Earlier this week his nephew and his wife visited. They also urged him to do something. Our friend is petrified. He is paralyzed with fear. He says he is “dying.” We have offered to accompany him to the local police barracks to report the incident. He refuses to go.

He wants to sell his property and move to a safer location but doesn’t know how to take the first step. Many times over the past several years when my friend has encountered problems like this, I have done the legwork, got all the details and handed over the work to him to complete only to see him drop the ball. He does it every time. I don’t know if his problem is inertia, laziness, or just a predisposition to stick his head in the sand and hope everything will go away. His problems are not going away. They are getting worse. He is either unwilling or unable to take the first step to help himself. The old adage "You can lead a horse to water but you can't make him drink" comes to mind.

After my conversation with him yesterday about taking steps to report his neighbor physical threats to the police and his lack of action, I was unable to get a good night’s sleep myself. This is starting to affect me now and Lord knows I have enough problems with my Mother and her situation. I visit her next week. I have to gear myself up for that ordeal.

My friend has a partner who lives with him. They just celebrated 25 years of domesticity together. His partner is very capable mentally but unfortunately is so involved with himself and his hypochondriac ways that he fails to see the mental and physical decline of his partner. Bill has asked his partner if he’s noticed the change in his partner. The response was “No, I haven’t seen any change.” This is a very sad situation. Sometimes those closest cannot see a problem. The decline has been so gradual over the years they are blind to the the change.

This morning our friend lamented that he has no memory left. He said it is so frustrating because he cannot remember anything. We can see the toll it is taking on him. He looks haunted. He can hardly talk. I am at my wit’s end what to do. Should I do anything? I’ve offered to help but he refuses to do anything when we suggest concrete actions. He thinks if he buries his head in the sand he will wake up one day and everything will go away. That isn’t going to happen. As with my Mother, all I can do now is monitor the situation. Like my Mother, he has to make the decision to do something about his neighbor and selling his home. My Mother has to make the decision to move out of her home and into a more accommodating location for her physical and mental decline. It’s ironic but both of these people have told me all their lives that they didn’t want to become a burden when they became old. Well, they are now becoming a burden and they don’t even realize it.

I hope when my time comes, it is not a slow mental and physical decline like these two people I’ve known and loved all my life. I always thought a good way to go was to take a nap and not wake up. Hopefully I have a few more years to go (I’m 67 now) and if I do I don’t know who is going to be around to take care of me. My partner will be 81 next month so it is unlikely it will be him. I dread to think that any of my nieces or lone nephew would be my caregiver. I have several grand nieces and nephews but they only know me as the distant and mysterious “Uncle Ronnie.” And I certainly don’t want to fall into the clutches of one of these opportunistic gay men who specialize in “caring” for elderly gay men. None of these scenarios looks very good for my well being, peace and serenity at the end of my life. I try not to think about it. Perhaps this is why I’m so upset over the situation of my longtime friend; I fear that it will be me in the future. In the meantime, I will enjoy the small things of life like watching the hummingbirds feeding at the hummingbird feeder on my back deck last night at sunset. I treasure each day of physical and mental health I have on this earth for I know too soon it could all end.

Lapse of Judgement

Yesterday I had a lapse of judgement. I posted a blog about my experience yesterday with my longtime friend who is apparently in the beginning stages of dementia. I should have made that posting. It is one thing to post about my personal situation. However, it is quite another to post about someone else's situation and identify them. I was wrong to do that. Thank goodness a good friend of mine brought that to my attention this morning.

After I had done that posting yesterday a little voice on my shoulder said "You might have went to far with this posting. This is personal information about someone else and you should respect their privacy." However, I ignored that little voice in my quest to have all my blog postings honest about my life and my relationships. I was wrong in that justification. I have since deleted that blog posting.

If I ever refer to my friend's situation again I will not identify him by name or picture. I don't know what happened to my moral compass yesterday because I have not posted about four other friends who have developed cancer nor will I. That is personal information and I will respect their privacy. I may refer to their situations only in the abstract such as I don't understand why the nicest people I know seem to get cancer. I know some really nice people and I've known some not so nice people. It seems that the not so nice people live forever (not that I wish them any ill will.)

Again, I deserve the dunce cap the second time in one week.

Losing a Friend Part II

It was in 2001 when I first noticed that Bob might have a problem. I had given him a new computer and he was having a problem opening e-mails with attachments. Several times during my previous visits I sat with him and showed him the steps to open his e-mail, click on the “Download” button, and then click on the “Open” button. Yet, each time I visited Bob he told me he didn’t know how to download a file attachment (usually a picture.) For about the umpteenth time I sat with him at his computer again and told him to write down the three steps as I would show him again. I went through the steps, looking at Bob each time I went to the next step. It was then I had one of those moments that you see in the TV commercial for Alzheimer’s medicine. I knew. Looking at Bob all I saw was his gaping mouth and his eyes which showed that he wasn’t registering what I was showing him. His face was a blank slate. Nothing I was saying was sinking in. He couldn’t connect the dots.

Over the past few years prior to this moment I had noticed little signs like this. We used to joke about it as one of the “benefits” of getting older. Things that we used to take for granted like remembering where we put our glasses or car keys, we would forget. I know myself that I have to have a set routine or else I will misplace things. But I noticed that Bob’s forgetfulness was soon outpacing even my lapses of memory. Bob became so concerned that he brought the issue of his fear of dementia or Alzheimer’s to the attention of his caregiver at the Veterans Administration. He was told that as long as he was remembering that he was forgetting “not to worry, he didn’t have a problem.” So we both dismissed our forgetfulness as an inevitable consequence of getting old.

However, there was one thing nagging in my mind. I remember reading some years ago a woman’s account of her mother’s descent into Alzheimer’s disease. She said at first she would dismiss her mother’s forgetfulness as signs of her getting older. She and her family would make excuses for her mother’s sometimes bizarre behavior. But, as time went on, her mother’s forgetfulness and sometimes unusual behavior became harder to ignore. Perhaps the telltale sign was her mother’s retreat into silence. Of course there were the usual “good days” and “bad days.” Some days her mother would be her old self. Then on other days her mother would sit on the sidelines with a vacant look on her face, mouth hanging agape. That is what is happening to my friend Bob now. He sits with the vacant look, his mouth hanging agape.

More and more of those telltale “moments” were happening now. Bob has lived in Delaware since 1976. This past summer I called him to ask how long he has lived in Delaware. He said “Three years.” I said “Three years?” He said “Yes.” I said “You’re kidding! Three years?” He said “Yes.” He wasn’t kidding. I hung up the phone. A few minutes later he called back. He said “Did I say I lived here three years?” I said “Yes.” He said “I’ve lived here longer than that.” I asked “How long?” He said “Longer than that.” I asked again, “When did you move here?” He said “It was longer than three years.” End of conversation. This is when I knew he had a problem. He had no idea of how long he has lived in Delaware.

For the last several years I noticed that during our long phone conversations, I was doing most of the talking. That’s not unusual for me (as those who know me will knowingly attest), but our phone conversations were increasingly becoming one sided. At times I would ask Bob if he was still on the line. We used to have animated conversations on the phone. We would get into all kinds of discussions. Not any more. I felt like I was doing a solo reading. I dismissed this as my fault for dominating the conversation. It wasn’t too long though before my partner Bill made a comment about his phone conversations with Bob. Bill didn’t call Bob near as much as I did but he would occasionally call Bob to chat. Bill told me that he sometimes wondered if Bob was even on the line. I said to Bill, “Have you noticed that too? It seems like he isn’t there.” Now I know I can dominate a conversation but this was ridiculous. I was calling my long time friend to basically have a one sided conversation. Gradually, I stopped calling. My long time confidant was fading away.

Another sign of Bob’s failure of memory was his inability to keep a date. For years Bob and his partner Jim, and another friend had what they called the “Old Fart’s Night Out.” This was to get their friend Bart, a grumpy 86 year old closeted gay man out at least one night of the week. Bob and Jim would stop by Bart’s place and pick him up for their weekly outing. They would alternate between three places; Cracker Barrel, Bob Evans Restaurant or the Rehoboth Diner. I enjoyed these outings but wasn’t able to go out with them every Wednesday night until I moved down here. Once I moved to Delaware, I made arrangements to meet them at the designated restaurant for that week. It wasn’t too long before we encountered a problem. I would ask Bob where we were meeting, since Bob was driving Jim and Bart. Bob would say “we will meet at the Rehoboth Diner at 6 PM.” I would go to the Rehoboth Diner at the agreed upon time and wait for them. And I would wait. And wait. Six o’clock. I would wait another 15 minutes. Six fifteen. Still no Bob. Six thirty. No Bob. Where did they go? I thought I got my directions wrong. I would call Bob on his cell phone but he has told me he doesn’t know how to turn it on. The obvious question is why does he have it? He says “Jim knows how to turn it on.” When Bob and the crew didn’t appear at the Rehoboth Diner I decided to check Cracker Barrel. Yep, there they were, sitting at a table in Cracker Barrel. I dismissed this as a misunderstanding on my part on where we were to meet.

Now that I was living in Delaware, I could meet them every week. It quickly became obvious that Bob couldn’t remember where he told me we were going to meet. Sometimes he and the crew would be at the agreed upon place at six, more often than not he wouldn’t be there. After few more times of running up and down Rt. 1 wondering where they were eating, I decided that if they didn’t show up I would just go home. Then something else interesting happened. Bob would never call and ask “Where were you?” I let it go a week then I called the next week and asked “Where are we meeting this week?” I also asked where did they eat the previous week. He told me but never asked where I was. Now I’m thinking maybe they don’t want me along. Both Jim and Bart are none too fond of me for different reasons. Jim is a very insecure person who feels threatened by my friendship with Bob. Bart hates anyone who doesn’t subscribe to his Kool-Aid drinking Far Right views. You disagree with him when he's spouting off, and he will shout you down even if it is in public. He's not a pleasant person to be around. After several months of missed connections, I decided that it was time to discontinue my membership in the “Old Farts Night Out” club.

The accumulation of forgetfulness and unusual behavior from Bob was becoming too much to ignore. The time the three of us (Bill, me and Bob) went to the VA for our flue shots. Bob wanders off. The time the three of us went shopping at the Wal-Mart in Georgetown, Bob wanders off without saying a word. The time I was helping Bob research a missing CD. I gave him the address of the Comptroller of the Currency to write a letter. He couldn’t get the name right, kept saying “Currency Controller, Calculator of the Controller, Controller of the Dollar” and other versions of Comptroller of the Currency. I eventually wrote the letter for him. I asked him to sign it and mail it out. A few weeks later I asked him if he heard anything. He didn’t remember the letter. This particular episode had many more factors involved which I won’t go into here. I went with him to Wachovia Bank to help him recover his CD. I gave him the address of the Unclaimed Funds for the state of Pennsylvania (he had deposited his CD at PNB Bank in Philadelphia.) It was like pushing rope. I explain all this to him and I got the same vacant stare and hanging open mouth when I was showing him how to open an attachment on his e-mail. His brain wasn’t able to connect the dots. The lost, vacant stare. The slack jaw. No more the Bob that I used to know. Animated, joking, smiling, laughing. That Bob was gone.

I feel as if I’m losing a friend. I am losing a friend. The best analogy I can think of is an astronaut who is taking a space walk. He (or she) is tethered to the spaceship with a line. That line gets lose and the astronaut is slowly slipping out into the great void of space. We can see that astronaut but we can’t reach him. We extend our hand but his hand is out of reach, slipping slowly but surely further out of reach. We watch helplessly as the image of the astronaut gets smaller and smaller as he drifts farther out into space. Eventually the astronaut is gone, swallowed by the endless expanse of the universe. I’m losing my friend. He is slowly slipping away.

During the past several years I have lost friends. Some have moved on with their lives and not kept in touch. Others have become ill and died. This is the first friend I am losing to dementia. It is sad and I don’t know what to do. A part of me is hoping Bob will call me one day and say it was all a big practical joke. The Old Bob would do something like that. However, my heart tells me that the Old Bob is gone. He’s been replaced by this person with the vacant stare and slack jaw. The Old Bob that I knew is in there somewhere and I don’t know how to reach him. I fear that I have lost my friend.

To be continued.