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Steps up and down!


RLT

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What a whirlwind of change has happened around here this month. Some of it has been difficult but for the most part everything has ended up being good.

 

I met with the Money Follows the Person (MFP) again and the two women were a tremendous amount of help. I am amazed at how much is now available for Dick should he come home. We are talking about 2 hours of home health in the morning and 3 in the evening with Day Care five days a week. Then he will have 20-30 hours of personal attendant time. This would be someone that I hire either on my own or through an agency but it would be paid for through the Elderly Waiver program. With all this, it is still cheaper than a full-time nursing facility. Of course things are still in the works and I have not made any decisions.

 

Dick’s confusion has continued. Either this is a BIG step down caused by vascular dementia or I always wonder if it is a new stroke. He still remembers me but doesn’t always seem to make all the right connections about our relationship. He woke up from a nap the other day and asked where his ex-wife was saying “I thought she was here.” I am sure there was a dream involved but it took a few minutes for him to get caught up on that was long ago and now I am his wife. Still in that process he knew I was important and he held on like you would a lifeguard ring as if he was afraid of sinking in the confusion. Then when I brought him home the other day he asked me, “Whose house is this.” He figured it out when he was inside but still there is that big delay in recall.

 

Our Valentine’s Day together did not go as planned. It was still very successful. There have been so many demands for original copies of Dick’s Power of Attorney that I have ended up without one! So I took Dick to motor vehicle so he could “sign” for his new Handicap placard. That done I had the brilliant idea to make new POAs and get them notarized. Dick’s right hand does not work that well so he has had me sign everything for the past 7 years. That meant that his “signature” is about an inch high and a page wide. But if the state of Delaware accepted it I guess that everyone else should. I wonder about someone questioning his comprehension but I have the old copies to back things up. Dick always loved grocery shopping (I never understood that one!) so I took him to buy stuff for dinner for the two of us. I pulled out the best plates and silverware and put lit tapers on the table. Our dinner looked as nice as any fancy restaurant and tasted even better! He was not all that keen on returning to the nursing home but was too tired to complain!

 

The day before that, kid #5 announced that she wanted to move her stuff out Valentine’s Day night! That put a bit of a damper on my spirits and also meant I shortened Dick’s visit (but he was tired anyhow.) I bent over backwards to make things happen for her but she left mad! Go figure. I guess it was really just an expression of the fear and confusion in her mind so I made up my mind to not worry about it. Yep she called mom the next day!!

 

Since then it has been just me and the kitties – not nearly as bad as I had feared. In the end I have found I am relaxing for the first time in a long while. Someone said that of course I was more relaxed because I had been living under a teenage microscope who was self-appointed reporter to the rest of the family. I don’t feel I have to be around for her so I have been able to get involved in so many new activities. Of course I am still in the midst of my two months of putting Ruth first for a change so I spend less time with Dick as well. I actually have time now to make some friends, reconnect with old friends and have some fun! WOW!! (Of course now the cats think I should be home more!)

 

I guess Dick and I are travelling a couple of staircases. He has gone down a step but I have been able to climb a few. I know that Dick will continue to decline but I am hoping that I will continue the momentum that has propelled me the last couple of weeks. Not only figuratively but literally I continue to face the basement stairs. My nemesis for so long, I can now go up and down multiple times. My back still screams but it always will. The rest of me is getting stronger.

 

With the stairs mastered I have taken on basement cleanup. Kid #4 left her room rather nasty but then kid #5 left all sorts of mess behind. I have the first room’s carpet shampooed but it still smells. I have the second room ready for the carpet to be shampooed. I do only half a room at a time; pacing myself so I don’t end up back in the hospital. All the trash is out and only one more load of Goodwill needs to go out. Kinda proud of myself there! Ha

 

Now kid #2 is coming home this week for a few days R and R. Kid #1 feels so bad about her part in the recent family blowup; she calls nearly every day and sends her love. So even though I live alone I am not alone. And I am hoping this new excitement will carry me through the next set of decisions and changes that will be coming with spring only a few weeks away.

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Ruth: I can only imagine the pleasure in finding yourself again. With the caregiver duties and being a Mom to 5 girls, as well as a wife. All those definitions and yet "Ruth" is missing. Ruth just made an appearance. And isn't it wonderful honey, that you have discovered you like and trust her. She is strong, capable. Things you always knew but somehow got lost in your day to day responsibilities.

 

You are finding your way. Thank you for sharing the MFP plan. Wouldn't it be great if all states instituted this policy with the same great services. Think of the progress all survivors and caregivers could make with that kind of support. Regardless of your decision, please do support and enourage the continued funding of the program. It sounds wonderful. Good week, Debbie

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Debbie, Money Follows the Person (MFP) is a federal program which is available in all states. Delaware retitles it "Finding Your Way Home." I imagine all states have their own program to implement the program but it is available everywhere within the US. It covers people who are currently in full-time nursing facilities or qualify to be, and eligable for Medicaid. If you have someone in a nursing home they will qualify quickly unless they have long-term care insurance or are extremely wealthy. There are other qualifiers medically and based on your ability to live independantly or with family. They will even help find a place for you to live or modify your current home for accessability. They cover transportation and even get you set up for other community based benefits such as meals. In our case I should have assistance with Dick most waking hours. But there are still the nights. They do provide the medical alert pendants or bracelets in case of falls. So I guess if Dick fell at night I could just hit that and get help lifting him. It is a big step though. I hope this information can get out there for others to take advantage of.

Ruth

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