Finding a new normal

We’re settling into a new normal here.   My husband has late stage COPD and acute respiratory failure, along with normal pressure hydrocephalus.  He’s had COPD for over 20 years and still was smoking 2-3 packs of cigarettes a day, the day before I took him to the ER on January 19th.  Days before that our primary care doctor had put him on an antibiotic and prednisone, because his lungs sounded terrible and he had ordered a CT scan.   Long story short, my husband is too weak to even sit up unassisted and needs complete care.  I don’t want this to sound like I am angry at him about the smoking, just stating the reality.  Every time a doctor or I tried to talk to him about smoking, my husband got belligerent.  My husband is 64 years old and has smoked since he was a young teenager.  His mother died of late stage COPD and acute respiratory failure.  So here we are – with an expectation of less than 6 months to live.

The normal pressure hydrocephalus causes my husband to feel like his feet are stuck to the floor and in 2012 when he was first diagnosed, he had been falling frequently for about 5 or 6 years, had developed an unsteady, side-to-side gait and developed very noticeable short-term memory loss.  He refused to go to a neurologist until the problem was so severe he couldn’t take even a few steps without falling and he insisted that whatever I was using to clean the carpets in our house was making his feet stick to the floor (even though he had the same problem outside and other places too).  Then in 2012, I made an appointment with our primary care doctor and insisted this was it – he had to see a specialist.  I had already gone through buying him a cane, several years before this, then our daughter had gotten a walker for him, to prevent falls, and he said he didn’t need those…

In 2012, he was diagnosed with normal pressure hydrocephalus, referred to a neurosurgeon and had VP shunt surgery.  The shunt improved his mobility a great deal for a few years, but he did rely on a walker to get around.  His short-term memory never improved.  Both the mobility and short-term memory loss became worse and in 2018, he had VP shunt revision surgery, but his condition never improved and both his mobility and short-term memory loss have gotten worse.  He knows he can’t remember and it frustrates him every single day.  He loved to read and can no longer read even a few pages of a book, because he can’t keep track of what he read a few minutes ago.  He has the same  paperback James Patterson novel, Never Never,  on the table next to his ashtray for a couple years now.  He picks it up reads a few minutes and then sets it down.  He can’t follow TV shows or movies either.

Every day life has become very challenging for my husband in the past 2 years and for me and our family.  As my husband became almost completely wheelchair bound, life has become an endless daily routine of my husband trying to walk with his walker and more falls than I can count.  He didn’t have the strength to move around in the wheelchair by himself.  The doctor ordered a motorized chair, but my husband doesn’t have the manual dexterity to operate the joystick control or the attention span to pay attention to operating the chair, so it’s been assisting him to take a few steps to get him transferred to the wheelchair, all day long.  More times than I can count, he’s tried to walk with his walker or forgot to grab his walker, where he grabs furniture or the wall to try to walk and falls.

Did I mention my husband is very hard-headed and determined to fight on (and against advice),   When he falls, his usual response is a jovial, “I’m a paratrooper; the Army taught me how to fall.”  Apparently, they did a good job, because it’s a miracle he hasn’t fractured a lot of bones and only needed stitches in his head, one time.  And that time, blood was gushing out of his head, I was worried about that VP shunt in his brain, because the gash wasn’t that far from the shunt and my husband’s response was “it’s just a small scrape, I’m fine”… as our son and I got him  loaded in the car and to the ER for 5 staples.

I’m not angry at my husband, just resigned to the reality of his condition and the other thing I feel is immense relief that he has hospice care, because I would have no clue how to care for him in this condition on my own.  Last Tuesday, some hospital lady, not sure what her title was, but she came to talk to me about home health care for when my husband is discharged.  She was happily telling me about the wonders of physical therapy, occupational therapy, etc. and I was seized with fear.  I had no idea how on earth I could care for my husband, in the condition he’s in, on my own.  There must have been some crossed wires there, because a few hours later the doctor came to talk to me about hospice care and it was a huge relief.  Now, I have professionals managing his care here in our home and I have people I can call 24 hours a day, if I need advice or assistance.  He is completely bedbound and keeps asking me to help him get up to go to the bathroom and it’s doubtful that’s happening.  He’s too weak to even sit up on his own.  He is also adjusting to this new normal, but he’s very happy to be home and out of the hospital.

The oddest thing is my husband is more lucid now with the home oxygen than he’s been in several years, so I suspect the lack of oxygen was adding to his cognitive decline.  The home oxygen is another long story… that was first prescribed in 2003 after a hospital stay.  My husband used it a short while, then said he didn’t need it.  Several years later, he had another respiratory crisis and he was once again prescribed home oxygen – same thing.  So, he was sitting here struggling to breathe, didn’t want to go to the pulmonologist the past few years, because the PA there tried to talk to him about the smoking, and we have two home oxygen machines sitting in the garage.  Our primary care was trying to manage his care as best as possible – all things considered…

All four of our  kids came home and helped me get set-up and organized for this new normal of hospice care and I’m much calmer, but the important thing is my husband is getting excellent medical care here in our own home.   He’s not smoking, because I refuse to be the person to give him a cigarette that could end his life.  He misses our back porch, where we had windows, heat and air installed years ago, so he could be comfortable out there smoking, but everyone’s got to make some concessions in this situation.  He’s got nicotine patches.

My husband is sleeping a lot, so perhaps I will be able to get some blog posts written.  One of our sons installed a baby monitor and gave me this monitor that’s about the size of a cell phone, so I can keep an eye on my husband anywhere in the house, hear him ask for anything and I can press the talk button to talk to him.

I keep warning my kids, after all of this 24-hour a day caregiving stuff, for years now, I am exhausted a lot of the time and who knows, I might croak first.

Each experience in life brings surprises, so my first surprise has been the enormous relief I felt with the idea of hospice care.  I was to the point, for several months now, of not knowing how much longer I could manage his care at home alone.  Every time I mentioned getting home health help, my husband said he didn’t want that and I feared no one would deal with my husband being combative or uncooperative to the physical therapy, occupational therapy route again (he had that twice before after hospital stays).  This time, I made the decision.

These hospice workers have been a godsend.