Posts Tagged diabetes
For me and for many who were touched by this horrific event. On August 23, 2005 a storm formed in the Atlantic that would become the costliest and one of the five most deadly hurricanes in the history of the United States. It was a monster! But I was living in the Midwest and far away from this natural disaster. I was dealing with something I knew would come one day but didn’t foresee it coming when it did or how it did.
My father had been living in a Veterans Home for several years and had already lost both of his legs to the ravages of diabetes and his kidneys were failing him. He, being the stubborn man that he was, refused to get dialysis and truth be told it would’ve been a Herculean effort to get him to dialysis anyway. The home didn’t have the facilities for it and it would’ve required him going some miles away to a hospital that would do it, stay there for hours, and then be transported back – yet another thing the home wasn’t capable of doing. I was told that not only would the trip be very hard on him but so would the treatment and that when he would return he would be so spent that it would take him just enough time to recover…to be ready to do it again. I didn’t want to put him through that so I relented and didn’t fight him on his decision.
You see, his home was about an hour and a half drive away from where I lived. The reason he was there is that initially he was in a regular nursing home close by but he and I both hated it and the cost of care for him and mom was awful! I applied for him to be in any Vets home with the idea of just getting him in the system and then transferring him closer when an opening arose. Eventually an opening did come up close by but by that time he had gotten used to where he was (he even had his own private room -score!) so he remained there. He was having bleeding problems and had been going back and forth to the local(ish) hospital and it was wearing us both out! I had the chance to accompany the then husband to a meeting at a resort but I was torn about staying home just in case Dad needed me or to go and give myself a break. I went…and I regretted that decision.
It was at a meet and greet party that I kept stepping out of to call and check on my father when I was told that he was getting worse and what did I want to do. Long story short (and to be honest a lot of my memory of that night is a panicked blur) I said put him in an ambulance and get him to the big hospital near where I lived that had done some surgery on him before and do it now! It involved a lot of phone calling with that hospitals ER department, asking if a certain renal specialist was going to be available, begging with tears in my eyes over the phone for an ambulance service to take him on that hour and a half drive to the hospital…and then me agonizing over if I should leave the event and go be with him. Once he was transferred to the hospital I spoke with the attending who said he was lucid and talking and I could relax. Me? Relax? Hell no! Screw that!
I was in the hallway outside of the party when I just slid down the wall and began to sob; my body just quivering from the weight of it all. Strangers were stopping to try and comfort me fearing someone had hurt me but I was crying so that all I could do was just shake my head. I paced the floors of that resort almost the entire night trying to get a clear mobile phone signal where I could before I finally said we are leaving I have to be with my father! I’m not sure when it happened but somewhere in all of the phone calls his doctor told me that he threw up blood that looked like coffee grounds and that he lost consciousness.
The resort was a 2+ hour drive away from the hospital and there was some speeding done; I am thankful that one state highway patrolman just told us to slow down and didn’t arrest or ticket us. When I rushed into the hospital, my father was in the ICU hooked up to all manner of wires and tubes that beeped and pinged…and a ventilator. I stopped crying and shifted into ferociously protective daughter/caregiver mode. I was told that it didn’t look too good for him and that I probably should let him go. Wrong thing to say to me people! I asked how long could he stay on the ventilator before he had to come off. I had a week; a week to figure out what to do, how to approach it, research options, make plans and backup plans for those plans, spend every day at his side, snarl at some condescending medical folks (don’t ever piss me off when it comes to the care of someone I love) pray and watch the television in his room that was on constant loop of – you got it – the coverage of Hurricane Katrina.
It was like watching the proverbial car wreck. Everyone in the ICU unit had it on and we all just couldn’t quite turn away from it; it was a morbid fascination. I too watched and couldn’t believe what I was seeing on the television as I was trying to hold it together for the man in that hospital bed who I felt I had somehow failed; who I hadn’t spoken to when I could still talk to him because I was so busy trying to figure out what to do for him… and now I could no longer hear his voice. All I could hear was the news report of Katrina and the machines that were keeping him “alive” making their noises. Some days when I would sit there with him and talk to him, stroke his hand or hair or pray that a miracle would happen, I would switch off the television entirely or turn it to another channel. Let me tell you, it was hard to find something else to watch what with it being on every major channel and hospital televisions aren’t known for having a lot of viewing variety.
Even when I would change the channel or turn off the TV, if I left his room to go get something to eat (I didn’t eat much during this period – I had no appetite) or to just go for a walk, when I would return someone would’ve switched it back to the coverage of the hurricane. And what was shown was a nightmare! I had been to New Orleans and here I was sitting with my father who was dying watching the destruction and deaths of others. I recognized areas they were showing, I had eaten at some restaurants that were destroyed, the bottom level of the hotel I stayed in was shown on fire. It was a horrible situation all around…and I watched parts of it in surreal amazement while I was still holding on to my father with the hopes of a child wanting daddy to come back.
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.
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!
Mom could use the telephone up until the dementia took over and would drive me absolutely bonkers doing it! They had this very old fashioned rotary dial black phone (thing was so solid and heavy you could’ve hurt someone with it) on a stand in the kitchen with the yellow and white pages phone books underneath and this black personal phone book with all of the numbers of the children, friends, the car repair guy, and her beautician.
In the early stages of her descent she would call me up and ask me to look up a number for her in the phone book (this was before everything was online) and I would be totally exasperated. “Mom, why are you calling me to look up a number for you?” I would ask. And that is when the excuses would begin. Excuses like her phone book was out of date, she couldn’t find the number, the print is too little for her to read clearly, and of course the….”What? You can’t do this for your mother?” comment.
It drove me nuts but I didn’t think much of it other than how it was a pain in the rear to me; I really didn’t try to do something, anything about it.
Slowly it began to change and it wasn’t a good one and sadly I still didn’t quite know what was going on or what to do. She began to call me and say that there was some man outside in the yard and what should she do. Or that there was a strange man trying to break into the house would I call the police for her. Or that she didn’t know where daddy was and was in a slight panic.
Guess who the bad man was that was trying to break into the house, etc.? Yes, it was dad.
I knew each and every time it was dad who was outside trying to get in. Why was he trying to get in? It was because almost as soon as he would go outside to take out the trash or get something from the car or anything that involved him going outside, mom would lock the door not remembering he had stepped out. Sometimes he remembered to take his keys with him and sometimes he didn’t. It was when he didn’t that I got those calls from mom.
I would try and calm mom down while working slowly and painfully at getting her to understand that it wasn’t a strange man skulking around the place, it was her husband out there and that she had locked him out – again! This worked for awhile until the awful combo of dad’s health declining along with the dementia taking more of mom meant things were transitioning from annoying to dangerous.
I don’t recall how I finally convinced my parents to let me have a key to the house – they were both becoming more paranoid and increasingly withdrawn from the world – but thankfully I did because one night I got a phone call not from mom but from their neighbors across the street. Mom had locked him out again and he hobbled slowly and painfully across the street to ask them to call me. You see, dad had advancing diabetes (which had not been diagnosed yet) and the nerves in his lower legs were racing straight into permanent nerve damage. Poor dad must have been so embarrassed because he had been working his level best at keeping moms declining mental health a secret from everyone.
So I made the half hour drive from where I lived telling my family that I had to help dad/grandpa back into the house because he was locked out accidentally. Mom was all flustered when I opened the door to let me and dad in; I made sure that I made the announcement of “Hi mom, it’s me!” before I walked in because she was also beginning to become a bit violent sometimes in this stage of the disease.
After that time I think dad got the clue to always keep his keys on him. To help them with phone issues I bought them this big button phone and keyed in all of our numbers so that all they (by this time mainly dad) had to do was push #1 for me, #2 for my sister Eve, and so forth. When they both entered nursing homes that phone went with dad to his room.
It was a rough patch in the road of being a caregiver; just one of many more to come. And right now I wish there was a button I could press to hear their voices again on some device; their healthy not sick voices. I’ve only got one VCR tape somewhere, I hope, that has my parents on there talking to me and my sisters at a family dinner. It’s the only thing I have of them besides some photos.
Today there are videos on phones and other devices where you can capture your loved ones for posterity. You can carry those memories with you or have them on your computer or tablet. I highly recommend that you do because one day you will want to see and hear them again as they once were or to share them with family that never had the chance to know them.
I have been blogging elsewhere for over two years and occasionally would mention about my long tenure as a caregiver. I’ve finally decided to go ahead and split from my main blog and branch off into new territory with this blog.
I was a caregiver to my parents for 14 or so years. Mother had Alzheimer’s and Dad had diabetes. Mom has been gone now for almost 4 years and Dad for almost 9 but for awhile there I was meeting myself coming and going while trying to take care of them when they were both at home together and then when they moved into two different nursing homes.
Someone who is caring for children while tending to the needs of their parents is called a member of the sandwich generation. I used to call myself a member of the sandwich at the bottom of the lunch bag squished by the other things in the bag generation. That is how I felt.
My goal is to tell the tale of what I went through as a caregiver in the hopes of first and foremost helping myself to heal as well as hopefully helping others; letting them know that while it is not easy being a caregiver, it can be done. You can do it!
Now let me get back to tweaking this blog’s appearance and I will see you soon.