Approximately 20 years ago he came home from a doctor's appointment and informed me that he had diabetes. He was 52 at the time. We'd been married for 25 years (with an additional 4 years of dating prior to marriage), had 3 children (ages 20, 18 and 15) and were the owners of a successful property appraisal business, which we both worked at. In all the 25 years of marriage, my husband hadn't had any major health issues, so this came as quite a shock.
Jack was more shocked than I, so much so that he said he had contemplated not coming home at all and just driving his vehicle off a high cliff somewhere up in the mountains, rather than live his life with this disease and burden me and his family. As children growing up in the 1950s, diabetes was almost as dreaded a word as cancer ~ we didn't know a lot about it, only that it was quite debilitating. He also said he didn't want to stick needles into himself all the time.
Jack was also of a generation of men, particularly, who had a hard time coping with this type of illness. There was a great deal of denial, so much so that following a diet, keeping track of blood sugars and changing a lifestyle which included eating whatever one wanted and often adding drinking beer along with it, was something they didn't want to give up. Ignoring it and going along as usual kept things at bay and left him thinking all was well with his health. Over the years, we did have some close calls with hypoglycemia, which we learned to deal with.
Fast forward to 2002. Things were tough for us financially and Jack made the decision that there were other things more necessary than paying for his medicines. One day I noticed that he appeared so much thinner and his bones were more prominent. He eventually couldn't get out of bed. After several days I contacted a friend who worked in the VA home loan program. When I told him about Jack's condition, he told me to get him up to the VA emergency room. I informed him that we didn't have a primary doctor assigned to us yet (it had been about 1-1/2 years of waiting to get into the VA system at that point). Our friend told me that ANY veteran can be taken to the emergency room, even if they don't have a primary or are not currently in the system. At that point, Jack was dangerously hypoglycemic.
With our friend's help, we were introduced to the local representative of the American Legion, who took care of all the paperwork so Jack could start getting treatment immediately at the regional VA. If it hadn't been for our friend and American Legion helping us, Jack would have died.
That didn't, however, get my husband to start doing everything he could to get a handle on his diabetes. On October 31, 2003 having come home after a long, exhausting appraisal trip, he called to me and said he was having some problems. Walking down the hall, I saw him with his hands on both sides of the hallway trying to navigate. He told me he felt funny. Not wanting to take any chances I took him to the emergency room, where we discovered he had had a transient ischemic attack (TIA), which they referred to as a mini-stroke. It was not debilitating & he was able to come home that same evening. It did scare me quite a bit ~ he, however, took several years before he admitted he'd had a mini-stroke. Fortunately, the only long term residuals have been a balance problem and sometimes getting words reversed or struggling for a word now and then.
Due to not taking care of his diabetes, the side effect from that was that his kidneys started to fail. We coasted along with VA's help until April of 2011. At that time, he started peritoneal dialysis with his treatments taking place at night while he sleeps. It is now about 1-1/2 years into the treatment and so far, things are holding. We do know that with his other issues (hypertension, coronary artery disease and the diabetes), the outlook isn't as good as some have who are on dialysis for many years. Life expectancy on average for peritoneal dialysis patients with other health issues is about 5 years from onset of dialysis treatment. He opted out of transplantation procedures due to his age and other issues.
These last 1-1/2 years have been a time of learning, praying, life changes and learning how to cope with End Stage Kidney Disease. We seem to always be learning something new and feel that the learning curve has been tremendous, especially as seniors. We did retire from our business when he started dialysis as we knew it wouldn't be easy for him in his particular profession. We are so glad we made that decision. Looking back, I don't think we could have handled working and learning everything we had to for his life-continuing treatment.
As happens in many cases like ours the caregiving has fallen to me, which I am happy to do. He served his country, took care of me and our family all these years; now it is my turn to help him. It is very difficult for him to give up doing things he's always been able to do. Peritoneal dialysis requires a catheter in the peritoneal lining of the stomach, so lifting, bending, or physical activities aren't allowed. Another side effect is that the stomach girth grows and with that extra weight, issues with standing too long or walking for much distance has escalated to the point that he is pretty much sedentary.
My role in all this is to help him with his supplies each day, making sure he has his medicines available, taking care of the refuse from the supplies (it's a HUGE amount), being available in case there are problems, taking care of the physical things that are required in and around our home, watching his diet with meal planning, etc. As time goes on, these things will probably increase. As well, being there to support and encourage him is a large part of the caregiving that, as a spouse, I must be ready to do.
This is my/our story and how we got to where we are today. Retirement isn't what we'd hoped and if he could go back and do things differently, I'm sure he would. But then, hindsight is always better than foresight, right? We must now deal with the hand that God has dealt us. With the support of our children and their spouses, and their friends, we have help handling things that neither one of us is physically able to do. God bless them for that!
My husband has many days that I know he's overwhelmed, depressed, frustrated, guilty ~ all emotions that the ill half of the marriage feels. The hardest thing he's had to deal with is having to watch others do for him ~ he's a proud, independent man. As we go to the VA, we find there are many there who are humble, appreciative veterans that gave to their country and now we, as spouses, can give to them.
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