Posts Tagged parents

Father’s Day and Caregiving

My daddy (yes! I will forever call him daddy) passed away in 2005 from renal failure brought on by diabetes.  For five or so years before that I was the primary caregiver to him and mom at the same time.  For awhile there I tried to manage taking care of them in their home but when that blew up they had to be sent to two different nursing homes because they had different health concerns.  Mom had Alzheimer’s and Dad was a diabetic.

The parental holidays of Mother’s and Father’s day were always bittersweet for me because they were both sick, in care facilities and apart from each other.  My only solace was that at least mom enjoyed her chocolate I always brought her for her day – even if she hadn’t a clue as to who was feeding it to her – and Dad, while getting progressively sicker, knew who we all were and could enjoy time with us in almost the same ways as before he became ill.  He could read the goofy cards we got him (we were never a family of mushy cards; it had to be fun and silly or it just wasn’t us!) and we would tie a balloon to his wheelchair for awhile until his grumbling made us take it off.  But he would always proudly wear the wonderfully outrageous tee shirts I would get him as a present.  It got to a point that the staff would come by to see what I brought him this time.  Whenever he would wear one of those shirts the staff would smile and say to him “I see your daughter got you another shirt, Thomas.”  That would make him smile; anytime something made him smile that would make me happy.

But no matter how the day would go there was still this bit of sadness because we had to drive a long way to get to his Veteran’s home and I would ultimately have to slip away from the burger bonanza (we knew we were doing wrong by his health but we always brought him burgers, fries and a malt on special days) to go talk to the nursing staff to handle business or to check on his kidney function levels.  Nothing like going over the numbers on a chart that are telling me that my father’s kidneys are failing and only dialysis would help him.  See, the problem with that was at the VA home they could not do dialysis and he would have to be taken so many days a week to a hospital that was an hour away for the treatment and the cost of going back and forth was sizable and not covered by insurance.  Daddy put the brakes on that option by saying – and I quote – “Hell no! I am not going to go through that!”

Stubborn hard headed man but it was his choice and other than going through legal hoops I could do nothing but respect his wishes.  We got into a few arguments about his treatment plans but in the end it was his body his choice and his mind was still pretty sharp so I had to let him chose to live and end his life they way he wanted to.  Lord! That man was stubborn and to this day I feel that if he hadn’t been so he might have been spared some of the harshness and collateral damage (leg amputations) of the disease.  Again, his choice.  That is something that all of us as caregivers have to go through; doing this dance of what we think is best for the ones we are caring for vs what they want.  I wish you the best if you are in the midst of this tango and really hope you never have to go through the process of legal guardianship for your loved one in order to take care of them – that can get ugly all around.

The first holidays after a death are always the hardest and to be honest they never get really easy – just not as painful.  For Father’s Day I now send a wreath to his grave site and when I could I would go visit and sit on his grave and tell him all about how stupid his grandchildren were 🙂  Yes, I would sit on his grave facing his headstone and have wonderful conversations with him.  We all do what works for us.  When he was alive I envied others who had father’s that they would go visit at their own homes or they would post pictures on social media of the family all surrounding dear old Dad at a family gathering or restaurant.  Eventually I came to terms with those things and I stopped caring about what others could do or did and was just thankful that no matter his condition I could still touch his hand, stroke his beautiful curly hair, and offer him a beer even when it became difficult for him to drink one.

Now I just feel a bit sad, shed a few tears, and miss my daddy terribly but I am happy he is with mom and is whole again.  For those of you who still have your father with you I hope you have a wonderful Father’s Day with him.  If you are his caregiver I hope the day is extra specially good because the rest of the days are probably rough.

Happy Father’s Day Daddy.  Love and miss you.

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About Dad and that really wrong diagnosis

This past Sunday was Father’s Day and while I still miss my father, I wasn’t that broken up about it…this time.  How emotional I get about certain holidays and birthdays varies; I think I am moving on and I am not that saddened when these certain times come around.  Oh sure I still and will always miss him but I just don’t cry like I used to.  But on to what this post is really about.

Dad, like mom, was not about going to the doctor for anything.  Home remedies where their mantra even though they did take me to the doctor because I had asthma but as for them? Short of something major – and I do mean major like needing stitches – they never went.  So as mom continued to spiral down into Alzheimer’s, his body was failing him and an insidious disease was beginning to creep through his body.

I had noticed that dad was limping more and my concerns were brushed off with the cursory “I’m fine, just getting old!”  At the time he really wasn’t that old (late 60’s, very early 70’s) but I knew something was wrong; again as with mom not what.  Push came to shove and after some pleading and nagging and his realizing things were not getting better I found a doctor to take him to.  I believe he was an internist and I regret that I ever took him there.

Why? Well it took hell and high water to get him and mom to that office (I had to beg them for a time period when other people wouldn’t be there as by this time her behavior from the dementia was getting out of hand; more about that side of the visit later) and once there I had to stay out in the waiting room with mom to keep her from bolting or doing something not socially acceptable.  Therefore I couldn’t go back with dad to ask any questions or to express my concerns.

Dad was having great difficulty walking by this time which was so different from how they both had been a few years earlier before mom’s dementia came calling, when they used to go mall walking; and he often had to hold onto things like walls or chairs or whatever was handy to move around.  When he came out from the exam room mom made straight for him and began to tug at him faster than he could walk towards the door out.

I had to try and do three things at once: watch out for mom, watch out for dad being pulled by mom, and try to have a conversation with the doctor.  The doctor told me that he felt that dad had the beginnings of Parkinson’s based upon his quick assessment of taking vitals and watching him walk back and forth; he had the shuffle walk, stiffness, and poor balance which can be attributed to Parkinson’s.  I don’t recall if he was given a prescription or not although I do have a vague memory of trying to keep the two of them together at a pharmacy one time.

If there was a prescription given I am sure daddy took it for a few days, didn’t feel any change in his condition, and then stopped taking the medication – sigh.  As time went on his ability to walk became more and more difficult with him having to use a cane and then….  I will save the and then for a future post because guess what?  He didn’t have Parkinson’s.  It was something else, something that eventually took both of his legs and eventually his life – diabetes.  What he was experiencing were the nerves (neuropathy) and blood circulation in his legs being damaged by that disease.

What I am trying to encourage you who are at any stage of caregiving  is this.  No doctor on this planet is God.  They make mistakes and some of them are really crappy.  This doctor didn’t test dad for anything; he just had him walk back and forth.  I’m sure dad did not tell him everything about his symptoms and that is why I wish I could’ve gone back there with him.  Maybe if he had gotten a proper diagnosis the diabetes might have been controlled and his standard of living might have been better.  Maybe.  I implore you that have loved one you are caring for to do your damnedest to talk to their doctors (if and when you can get them in) about the symptoms and signs you see about their health.

True, medical professionals go a bit bonkers over patients who come in with a self diagnosis after having seen one commercial too many or after having surfed WebMD.com  but I’d rather you drive them crazy and ask them to rule out something than to miss it all together.  You have to be your and your loved ones advocate when it comes to medical care.  Doctors don’t always get it right, patients who are afraid, elderly, sick, or with dementia don’t always tell the full story.

When in doubt (and if you can afford it) get a second opinion!

 

 

 

 

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