Getting Ready for Larry's Homecoming

Well, I never thought that I would have a blog. My sister, convinced me that this would be the most efficient way to communicate with so many of you out there that have inquired about Larry and his health. Quite honestly, this is easier for me than to speak on the phone where I most often turn into a blubbering idiot. Often, I find it difficult to talk about Larry on the phone because it's difficult for me to control my emotions, and for someone who has admittedly been a "control Freak", my vulnerability shows through.

Larry will be coming home on Thursday, Sept. 11th. He hasn't been home since April 8th. which started with a much needed successful knee replacement and turned into a medical chamber of horrors. His medicare runs out in a week for rehab nursing assistance and we all decided it is most definitely time for "ole Lar to be back at his home. Imagine having the whole Spring and Summer months pass you by; missing his son's college graduation, watching Spring flowers bud and grow, not tasting a grilled hamburger, nor seeing a summer firework and most importantly missing the other July National Holiday-my birthday. Of course, Larry is a different man from the time he left his house in April to the present. He has changed physically-lost 50 lbs. , is extremely rigid and has little range of motion. He has also changed mentally, a result of the progression of the disease. Sometimes he's a little fuzzy-which I guess we can all admit to at times-only Lar's is a little more often; and then he has days where his acuity is pretty sharp. I strongly believe that a nursing home stay contributes to what I call "nursing home dementia."
If any of you have had the experience of having a loved one in that type of facility, you know what I'm talking about. I do not consider bingo much of a mental challenge.

As I said Larry has gone through a medical chamber of horrors. He has been in 4 different hospitals and 4 different rehab facilities since this all started. The knee replacement went well and the initial rehab started out ok to the point where Larry was actually walking with a walker as recently as early May. Then all hell broke loose. He contacted C-DIFF(a severe bacterial infection which affects control of all bodily functions-if you catch my drift-and leaves the patient extremely weak) followed by a yeast infection in his throat and the start of a pressure sore. This put him all behind the eight ball and rehab had to start all over in a different facility. Strides were attempted to get him up and moving , only to be sidelined by more C-DIFF and MRSA in his pressure wound site. This was also complicated by DVT (deep vein Thrombosis) in his leg. Another hospital visit, another rehab facility. So let's give it the old college try again. Larry is a fighter. Sure he complained about the food and getting out of whatever place he was or is in; but he continued to have the motivation and determination to proceed with all types of therapy in the hopes of being able to walk again and be able to go upstairs by himself. Unfortunately, that's not going to happen

I am in the process of turning my dining room into Larry's new bedroom. he needs to be on the main level. Unfortunately, there is no full bath on this level so the challenge has raised to design some sort of shower. I have some unconventional ideas that might actually fly.

We have decided to pursue the Hospice route of care for Larry. I met with them yesterday, and considering Larry's many needs, this seems the most reasonable solution that would best suit Larry and the rest of the family. For those of you that seem shocked by the "H" word, I have been assured that hospice is not necessarily an end of life option. Larry's progressive disease is just that-progressive. The Parkinsonism, referred to as MSA-multi system atrophy or Shy-Drager Syndrome has rapidly robbed Larry of muscle strength and tone, left him incontinent, the inability to swallow properly, and is showing signs of dementia; not to mention that he has a stage 4 pressure sore. He needs assistance with just about every activity of daily life. Now considering all that Larry has been through, I still consider him a remarkable man. He rarely complains about his care or his conditions. I , on the other hand have been like a pit bull particularly when it comes to nursing home care. The list of improprieties I have witnessed has been appalling. It has left me frustrated, exhausted , and above all angry. Remember those 50 lbs. Larry has lost, well they didn't just evaporate into thin air-noooooo, they have re-positioned themselves on this 50 something body. That, however is just going to have to be put on hold until later.

Now I have come to the part that is always difficult for people to address. HELP!!! I know many of you have offered to help Larry and the family in the past but quite frankly I really didn't know what he or us needed at that time. Now I do. As I have mentioned we are enlisting the help of hospice but I don't have the logistics worked out just yet. I am asking for your time. Larry cannot be left alone, and the boys and I need to continue to work. We need volunteers to basically sit with Lar from late morning until early evening. This would probably incur in 2 hour intervals depending on the volunteers. Not only would this be appreciated by us, but I know Larry would sincerely welcome the opportunity to visit with friends, family and neighbors-even if he does fall asleep. I have asked some friends to set up a volunteer spread sheet when the time comes and I have also requested the expertise of an RN friend to demonstrate and/or explain any conditions that may arise with Larry's care. If you all feel up to this challenge and it will be a challenge, you can respond in these posts or through my e-mail. I am also looking for help with the construction of a wheelchair ramp for our front entrance. If anyone knows "a guy" who does this, please pass the name onto me.

Well, it is late and I am tired. I hope I brought many of you up-to-date about Larry's status. My intention is not to bring on gloom and doom nor am I sugarcoating it. It is what it is and that's why everybody loves Larry.