When Will It End?

I hate my life right about now. I am living with tears. I am lonely. I am confused. I am frightened. I am confused. Do I feel better now that I have gotten that out? No.

I have decided to take over making his breakfast completely every morning for a while (maybe forever.) I nicely told him that he would have to stay in bed until I was ready to help, that unfortunately this is where we are with our life as of now, and that it means more loss of independence for him.


Seeing that he was upset, I told him that I need to talk about it with him and that I know it mades him feel bad and that eventually I  will be able to avoid discussing it. I just don't feel comfortable making unilateral decisions without telling him about it. I am sure that one day soon I will be able to do that as well.


He couldn't find the muffins in the refrigerator this morning, didn't know how to use the butter spray, forgot to warm the muffin up in the microwave and then wondered why it was cold. Instead of just sitting at his place at the counter, he was trying (again) to perch himself on the edge of the stool in a very awkward position in front of the drawers with no knee room because that is where he put down his muffin.


Until now he has been making his own breakfast but only at 70-80% success since returning from Mexico. Then I have to intervene or explain with explanations that are not understood. Taking over completely will be easier ... at least for me.


I will also begin to lay out his clothes every day because he not only cannot do this easily but also cannot judge what to wear based on the weather. Yesterday it was 90 out and he said he wanted a light shirt. I put a short sleeved polo out for him. As we were about to leave, he had on a long sleeve shirt and I questioned him about the short sleeve one. He said this was the one he wanted. I come to find out that he had on both shirts, thinking the Polo was an undershirt, however, when I named the "undershirt" he is not able to make an association with the item.

Until now he has been getting dressed on his own but only at 70-80% success. Then I have to intervene, or explain with explanations that are not understood. Taking over completely will be easier ... at least for me.

I have been handing him his night time sleepwear and laying out his morning sweats. Easier for him and for me.

I have decided to take over fully for breakfast and getting dressed because these skills come and go and get scrambled so frequently that it must be proof that he can no longer handle them. I get frustrated with giving instructions that cannot be followed or do no get followed or get followed incorrectly. 


In my life, I am used to telling or asking someone for something and then letting go knowing it will be done. Not so anymore with Gregory. So metaphorically, like the nurse in the old people's home, I will hand him his meds and stand there while he puts them in his mouth and swallows. Hope I do not have to start checking under his tongue to make sure he isn't spitting them out later.


Did I mention that last night at bedtime he was trying to read and again forgot that he needed his glasses.

 

A Tough One

This is going to be a tough one to write. My life is dramatically changing. Even as we speak I do not know for sure how to proceed. I do have alternatives available to me but all of them involve difficult choices.

Mexico was difficult for both Gregory and me. Gregory because he was disoriented most of the time. Me because I was "on duty" 24/7. Simple things like getting dressed or undressed caused him difficulties. My support often caused more confusion on his part. Did I hear you say HELPLESS? Yes, both of us. He helpless with what to do next. Me helpless with how to help.

While I am not ready to admit it, I think that Mexico might have been our last major trip. I fantasize about Europe (Paris, Italy, The Netherlands, England, Scotland.) I dream about a driving trip through the eastern U.S. to see the sights and to visit family and friends. A river cruse down one of the many great rivers of the world could be exciting. We watch Rick Steves and other travel programs and imagine. But I am not yet ready to admit that these might only be fantasies.

Gregory's re-entry after Mexico has been very slow. Re-entry you would think should be easier since it is back at home and routine and the familiar. But for some reason it usually is worse than when we were away. This time it is taking longer and many of the previous cognitive and self-help skills have not returned.

About a week or so ago, I felt like my life as I know it had changed. Gregory went to return the condo grocery cart to the lobby after we had brought the groceries to our unit. He has been doing this for the last five years since we moved in. Somehow this time he ended up on the 9th floor and didn't think to call me for help. He religiously carries his cell phone but I begin to suspect that he doesn't know how to use to make an outgoing call. He didn't know how to get back on the elevator to go to the lobby. I suspect that he got on the elevator on our floor and by the time he figured out which button to push, the elevator recording began "yelling" at him to select a floor and then the elevator just took off to someone else who was calling for it. He got off when it next stopped.

I called him after I thought he had been gone too long, found out where he was and went to fetch him. I gently asked if he could tell me what happened and of course he couldn't. I didn't press it but I cannot explain the weight I felt on my proverbial shoulders. I felt like our life would never be the same. Yes I can take the cart back but that was one of the last shreds of assistance he was able to give me. And the fact that he "got lost" in the building freaked me. Since then I have been afraid to let him and he hasn't asked to go on his usual long walks. He doesn't go swimming anymore. He sits and stares more and more. He "shadows" me when I am working around the unit or at my computer. He gets bored because he doesn't have anything to do but on the other hand, he can't do much.

I guess I will begin to go on walks with him now that the weather is nice and will take him swimming. But that means my life is on hold. I have begun the process of trying to find him a "companion" who can relieve me some of the time but that takes advance planning, scheduling, money, trusting another person, etc. It is a necessary thing to do but one that I am not ready for!

Since his getting lost, things seemed to be running a little smoother. I was able to get away for an hour to go to my Weight Watchers meeting last week. This week it didn't work. He wanted to sleep in. I made sure he knew where I was going and that I would be back in an hour or so. I left at 9:00 and when I got back at 10:15 or so he was still in bed. He asked, "Why have you been gone so long?" I asked "Why are you still in bed?" He replied, "I was afraid."

I had assumed that he would get up when ready and begin his breakfast. He usually starts off with a piece of toast or a muffin. I left his "placemat aide" (which pictures his breakfast choices) out for Tuesday breakfast. The assumptions I can make continue to be fewer and fewer and change from day to day.

So how can I go to my WW meetings? How can I go to Michael's Museum for a morning? How will I ever be able to be in an Opera again? How can I leave him in bed "being afraid?" I guess I am waiting for the aftershock of these changes to settle down so I can begin to investigate what options are available to me/us. Hopefully I will find the companion to be here but honestly, I am not ready for that level of his being dependent on me. What choice do I have?

Its the little things...

It is the little things that do matter in helping to keep Gregory active, involved, respected, and loved. Letting him help as often as possible, even in little ways, helps give him purpose and the sense of sharing our daily life. It helps him to depend on me more when he knows I continue to depend on him. Always acknowledging my appreciation and saying "Thank You" even though I am thanking him about the same things each day and sometimes several times a day, gives feelings of love. Keeping an eye on what he still can do ... at least do today, and letting him do it, allows him to keep his self respect. Not correcting but rather "walking behind and fixing" is also helpful. Telling him "I love you" many times a day, touching his face or back, planting a kiss, all tell him that I am here and will be here to support him.