[George]

Anger, fear, sadness, confusion, concern, love, caring,  all emotions that trip over each other.  Every day is different and met with resolve to do what we can to make my partner safe and comfortable.  No magic or miracles.  The elephant in the room just keeps getting larger.

[George]

my partner has experienced this for quite some time.  Nothing seems to resolve the loose bowels.

[George]

At the height of Covid my partner met with a Neurologist.  He had been falling, fainting and had drop foot for some time.  He worked in a hospital with special needs individuals and was admitted for fainting.  The Neurologist looked at the muscle between his thumb and index finger and gave him a preliminary diagnosis.  The Neurologist recommended a hot shot ALS doctor in Columbia University Hospital in NYC.  We tried for 3 months to get an appointment but the staff was so unqualified to work with patients that we gave up.  The Neurologist then recommended an ALS physician in Univ. Penn., Philadelphia.  Driving down for an appt, the car died.  Can’t make this up.  We called and were referred to another ALS doctor at Univ. Penn.  This physician also worked at the VA, Philly and we believe was a gift of God.  His knowledge, care, staff experience, and overall VA quality and caring, he was rapidly moved into the ALS system.  I went on a expedited learning program and reached out to any organization that maybe could give me more of an education.  I don’t wish this diagnosis on anyone.  Every day life is dictated by the disease.  Plans are tough to keep, and second guessing is the order of the day.

 

 

[George]

As my partners primary caregiver for 2 1/2 years after his ALS diagnosis, I had to learn early on that I cannot control this and Jon, my partner will tell me what he wants. I have learned that I take one step at a time and often everything changes in an instant. A much needed break is a week away and I am ready. I am forgetting very important dates, have mixed up meds, but Jon always double checks, forget things as soon as I hear them, am not sleeping at night listening to the speaker to his bedroom for any emergency, that rarely happens thank God. Often when I make sure he is OK before bedtime he will tell me he had an accident and needs cleaning. I have learned that he isn’t doing these things on purpose and I have to be responsible and take care of him. No judgments. He is at the point where he can no longer walk, arms and hands paralyzed, and he is 100% reliant on me or his part time aide to feed him, clean him, and everything else that the elephant brings into the room. So for however long this goes on, I have given my life to caring for him. Isn’t that what relationship commitment is all about? People tell me to put him in a nursing home. It may come to that but at the moment that is the easy answer. I pray that I can spend every second/minute/hour with him while I can. After 53 years together I choose to not look at being without him.

[George]

My partner has been diagnosed for about 2 1/2 years. Early on I felt I could do everything. As the disease progressed and he lost the use of his arms and legs, it became apparent that I was burning out and feared I would start making mistakes with his care. Fortunately for us he is a military veteran and the services provided to both of us are awesome. We have family therapy once a month, private as needed, his ALS nurse and the entire ALS team in the hospital continue to be wonderful. I do not feel I am here alone. I need something, reach out to the VA and they are there. We have also hired two Aides. One has become his personal friend and I think a family member. The other one is learning and we hope she decides to stay. Finally, the family has been insisting I take respite. I have trouble detaching but have finally rented a house down the NJ shore and in October my dog and I are going away for a week. Jon has been very supportive I hope to mentally heal a bit a sleep a few extra hours a day.

[George]

My partner Jon is either in a motorized wheelchair or bed. He has urinary issues and has no control over his bowel movements. Legs and arms are paralyzed and hands almost there. He loves company but we are careful to make sure he is able to go for a period of time, usually an hour, and then we ask company to leave. We find the direct approach works best since company can often have mixed feelings about how long to stay. So far everyone has been respectful and I think grateful that we took the lead. We feel that if they love you and care about you they will follow your requests. We are the same with COVID. We directly ask folks if they have all the vacs. If they aren’t, we thank them for coming but ask them to return when they are vaxed. Jon is going through enough to not be direct and have guests understand his challenges. So far no grievances.

[George]

As an update to my earlier post, in only one week Jon’s caregiver has become a member of the family and they are good buddies.  I believe God sent her and it was meant to be.  She cleans him, bathes him and is so, so comforting.  Both of them have decided that I am not needed for the early day care and that is fine by me.   For the first time in over a year, I was able to hop on my bike and ride for about 30 minutes in the country air.   When my phone rang and it was my partner, no emergency, just where are the wash clothes.  He has always been that way.  At the moment I am living in a gift of free space and I am enjoying every second.  I know full well that that peace can change in a second.

 

[George]

I have been caring for my partner for  one and a half years now, 24 hours a day, 7 days a week.  early on it was easy since he maintained most of his functions and I was basically support.  This elephant in the room has taken more space than we are comfortable with and now the care has become overwhelming.  His legs, arms and hands are basically gone and he is living 24/7 on a bi pap machine.  The routine is now help him to the side of the bed, dress him, lift him into his wheelchair, move him to the living room, medications, bi pap set up, bathroom,  breakfast, prepare, and clean up, and make sure he is safe.  as his condition became more challenging, the day became more filled with his needs and again it was only me.  I learned that the only way I was going to get some personal comfort was to get him to bed at night and go to my safe space, baby monitor on, and escape into a book.  He is now at the point where he needs more attention.  We were blessed by having a wonderful women respond to our outreach regarding being his aide.  My partner loves her, she is experienced and I am beginning to feel like I can let go of some of his care.  I now take our dog for long walks without worry and enjoy the beauty of spring and the sound  of birds.  Sounds crazy but I believe it is the sound of continuum.  As the Aide and my partner become more connected I plan on going to the beach with our dog and sitting for a few hours just smelling the air and watching the waves.  We all know how this is going to end.  The elephant in the room will leave and we will be devastated.  But as we will mourn we will also have to start to heal.  We have been together for 53 years.  I accept that it will be very, very hard, but I also know my partner will want me to live.  I hope I have the strength to carry out his wishes.

[George]

At least a year now.  He is eating less and less every day and still very lose and incontinent