Caregiving....

Caregivers are wonderful but can be a nightmare too. We have an exceptional caregiver, Heide, who goes above and beyond. But we did pay our dues along the way…many calling 5 minutes before they were to be here with a lame excuse. If they always need you to help them you are not getting the rest, you are paying for. Care.com is a great resource to view for help of all kinds. I usually interview them at a nearby coffee shop and go over what I need and what they expect for doing the position.

After our last trip when I contacted Hiede she mentioned that she needed to be out for 4-5 weeks because of surgery. Oh no…. corona virus….I put an ad out on Care.com and eventually someone answered. With the same thought, do I really want someone new in our home with the virus going on.

After helping Curly with his shower the first day we both quickly realized we came very close to calling the local fire department for assistance. I sat down and was exhausted and said two hours later, “Curly we need to have a different plan, the one this morning did not work well.” After distancing ourselves from the problem we were able to look at it realistically, answer was to get a mesh sling for the Hoyer and bring the Hoyer in from the garage and use that to transfer him to the shower wheelchair and back to the bed. We tried it this morning…not successful yet…Hoyer wheels will not fit under our bed. I just finished ordering 2” furniture lifts that will solve this problem. It also solved the problem I have of getting him in the pool. His trainer that comes can lift him into the seat. Kathy cannot, now we will bring the Hoyer lift out by the pool lift and I can use that to transfer him from his wheelchair to the pool chair. Pool time can now be every day.

We have had a rocky road the last few months. Pneumonia and heart conditions that activated his MS made it necessary for him to be hospitalized. Both times they suggested Skilled Nursing facility. This is an answer but with the Corona Virus I was not comfortable with it. I also remember his last skilled nursing where they would walk by his room and down the hall when his light was on because it is a lot of work getting a 6’5” guy weighing 230 lbs. up and in a wheelchair and most are understaffed. I had suggested that he should go to an acute rehab center. She said he did not qualify as the length of therapy would be too much. After this ordeal my mind kept thinking why didn't I personally check out the acute rehab centers....I just received a call from my neighbor who's husband was hospitalized and was told he did not qualify for acute therapy. I suggested she go to the acute rehab centers and talk to them directly. She did and was told that he may go there but it would be for modified therapy....Learn the terms so you can use them and move forward. The hospital never mentioned that to her or I.

I met with the social workers at the hospital and they referenced that we would be able to get in home care. Yes, OT and PT but Medicare does not give assistance in personal help like getting him in and out of bed or helping him get dressed. A reminder, if Medicare does not pay neither will your supplemental insurance. We declined the Medicare help because we would have had to pay privately for his personal needs, and we are already covering the cost of Heide’s care. I really think Medicare needs to look at this. They will send an RN out to do the vitals, I have been pretty good at reading numbers myself, the best help they could have given us would have been someone to help get a 6’5” man out of bed and into his wheelchair….Not available on Medicare. Once Curly is in his wheelchair we do not need at home therapy. Off we go happily to Brain and Nuero in Mesa.

Respite care. Because my husband is not homebound we do not qualify for respite care through Medicare. Now realize that if something happens to me my husband will need to be in a facility and will qualify because I am no longer taking care of him. We truly enjoy being together, over 50 years, and I can take care of him 24 hours a day 365 days a year. However, a few days of respite care would be nice. Someone making him a sandwich, making it possible for me to attend a funeral out of state. I am not asking for a vacation I am asking that they allow 2-3 days a year that he would be allowed to have care come in or possibly go to an assisted living for a few days. The days when I need to be gone can run between $300-$450 per day for in home health. None of that is covered. We are very fortunate that I was able to attend events on short notice because of Hiede our caretaker and Ron the aquatic therapist. Thanks guys!

Naomi's Caregiver Tip #160: 

You will have good days and bad, remember that it is okay to cry.

I have recently sent off a letter to Washington to gain some support for respite for the 24 hour a day caregivers. I chuckle here as this reminds me of my dad... he would send editorials to the Duluth Budgeteer all the time...apples don't fall far from the trees...Washington I am not giving up! Continue to check our blog as I hope to be posting their responses by the end of April.