JOAN’S BLOG – THUR/FRI, AUGUST 11/12, 2011 – SAYING NO TO EVERYTHING?

Lately all I seem able to do is make my husband feel sad. He does not say much, but his facial expressions tell the story. It is torture for me to watch his face fall, his eyes droop, and tears fall, when I say no to something he feels he desperately wants to do. He is like a child who has no idea why my reasons are sound.

This has occurred lately because he wants to take two trips – one to Rhode Island (we live in Florida) to his 50th high school reunion in September, and the second on a 10 day cruise through the Southern Caribbean in November.

Let me list for you his physical and mental disabilities:

Alzheimer’s Disease – mid stage. His deplorable memory is well documented in my blogs, not to mention poor reasoning, confusion, and slow processing. He needs to be told what to do and when to do it – continually. No matter what he is told, he cannot hold it in his memory, so he just keeps asking over and over and over again.

Diabetic Neuropathy throughout his body, which causes extreme pain in his legs and feet if he walks more than 20 yards.

Charcot foot – related to diabetes – extremely painful with danger of re-breaking the bones in his foot that have already been broken.

Stress fractures in his knees that will not heal (going on 9 months).

Due to his orthopedic’s instructions to “stay off of your feet” for the last year, his leg muscles are weak, and he has poor balance. Before my shoulder surgery, I was pushing him (he is 250 lbs.) around in a wheelchair, AND lifting the chair in and out of the car. Yes, we were using the lightweight travel chair. Pushing and lifting destroyed what was left of my rotator cuff and bicep tendon. Thus the surgery I had in June, for which I am now receiving therapy. There is no way I am able to now, or will be able in the future, to push him in a wheelchair. (Please do not suggest a motorized wheelchair or a “scooter”. The bureaucratic mess of getting that approved has been going on for months, and is a subject for another blog. For now, we are stuck with a walker, and wheelchair that there is no one to push. His shoulders are also so painful that he is unable to push wheels himself on a full size wheelchair. )

He truly does not understand that his physical and mental disabilities make traveling with him a horror for me. Although the airport attendant wheels him in the airline wheelchair, I am running behind them to keep up, carrying a bag on my shoulder, and wheeling the carry on luggage. I am the one with the travel documents, making sure everything is where it should be, both before and after it goes into the box and through the x-ray machine.

Let me translate the word “vacation” for you as it refers to caregivers. It means “take your caregiving work with you to a different location”. At least at home, the routine and placement of objects and rooms are always the same. In a hotel or vacation condo, everything is different, and needs explaining constantly. The routine is upset; he is upset; and I do all of the work.

The bottom line is that I cannot handle the physical and mental work involved in a trip to Rhode Island. All of that for 3 days, and then back home again. I do suppose there is no need for me to mention that he cannot remember what was said a minute ago, never mind recall people he has not seen in 50 years.

The cruise idea is even worse. Although for us, there is no plane travel involved – we simply get a ride to the port here in Florida – 10 days in the middle of the ocean on a HUGE ship will be a nightmare of monumental proportions. He did not have fractured knees on the last cruise (2 years ago), and he had a terrible time walking. There is no way he will be able to walk around the ship, even with a walker. I cannot leave him alone, at the pool, for instance. He cannot get in and out of it without maximum assistance; he will not be able to find the bathroom, never mind walk to it. As I said, I cannot push a wheelchair because of my shoulder. We only know one couple of the 4 (including us), who are going on this cruise. I could not expect our friend to babysit Sid for 10 days on the ship. He cannot swim in the ocean; he can go on a bus tour, but cannot walk to the bus. Based upon his behavior on the last cruise, he gets very agitated and upset if he is confused, rushed, or cannot do what he thinks he should be able to do. And he takes it out on…………..Me. No, no, no, We are not going on the cruise.

We are not able to afford these trips, and he does accept that as an excuse, but then he tells me how sad and disappointed he is that he cannot go.

And finally, there is the dog. We both miss having a dog, and he cries when he sees Golden Retrievers (our last 2 dogs were Goldens) on television. We had dogs for 36 years, BUT we also had ¼ acre FENCED IN YARD. Open door; let out dog(s). They ran, chased squirrels and birds, played with each other, lay in the sun, frolicked in the snow, fetched tennis balls we threw, and had their bathroom breaks in the yard. Here, we live in a villa. The dog needs WALKING. As if I do not have enough to do with my double duty caregiving of my husband and father, walking a dog is NOT on my agenda. Neither is having one more living thing to take care of. Neither are the vet bills.

So again, a big NO from me. I seem to be saying NO to everything lately and doing nothing but making him unhappy. Which, in turn, makes me unhappy. Alzheimer Spouse Caregiver - I hate this job.

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