Where Do We Go From Here?

Many people had been telling Donna that it was time to think about making a change ... Brenda and I supported that decision because the care for Mother had begun to severely affect Donna's health and that was not fair.  Now, since I am only ONE in a large family (even though this is MY blog and I can write what I want, haha), I don't want to be unfair to anyone so I want to insert a couple (I know some of you are saying "a couple, yeah right!") of comments here.  :-)

Steve was the oldest child, the only boy followed by 3 girls ... Donna, Brenda and tadaaaa, Me (they saved the best for last!).  That should be enough said, but I think you know me well enough by now to know I could never stop at that!   As far back as I can remember, our parents told us that we would have friends and our families would grow but that we would always be brother and sisters and we HAD to stick together and be there for each other because there was no bond stronger than family!

When it came time to care for our Mom, we did stick together.  Steve (we are so proud that he is a Vietnam Veteran!) picked Mom up most Tuesdays and she spent the night with him and he would bring her to me on Wednesday morning.  I took a 1/2 day off work and spent the day with her and her only living sister, my precious Aunt Dotti (there were originally 10 of them) running errands, going to the movie, lunch, shopping, etc. and then I would take her home to Donna at bedtime. I also tried to help on Sunday afternoons or weekends when needed.  Brenda got her on Friday evening when she got off work and kept her until Saturday evening.  Some of the grandchildren would pitch in when they could, and were needed, to watch her now and again as well.  NOW ... this is where I have to be careful not to get into trouble and hurt anyone's feelings (but it wouldn't be the first time that I get in trouble) ... I say I have to be careful because:   I don't want to take away what Donna did ... not only did she have to deal with every morning and many days, she didn't truly get to rest at night worrying that Mom didn't get outside and harm herself, she couldn't sleep for fear that Mom may flood the house AGAIN, she would get Mom ready for church only to leave the room and go back to find Mom undressed with 5 outfits laying out on the bed, and the list goes on and on!  (It took me a while to realize all of what she really did do and I regret that!)   I don't want to take away what ANYONE else did, including ME!  

BUT, I would be totally negligent if I left Tara out of this, it wouldn't be possible to tell this story without her!  Tara is Donna's daughter ... Tara is nothing short of an angel. Tara is a stay-at-home mom ... she has 3 children: Cole, 8; Isaac, 5; Amelia, 2 AND she keeps Brenda's grandson, Landon, 6 mos.  She was an active high school cheerleader & captained the college dance team even after she was diagnosed with Juvenile Rheumatoid Arthritis at age 16. She refuses to let that disease stop her and she felt the same way with her Gram.  Any time Donna had an appointment, Tara stepped in and brought Gram to her house (one more kid to watch was no big deal, right?).  In the beginning, it really wasn't a huge amount of work (she said), at times it even helped her.  Gram could hold Amelia while Tara got other things done but then as time went on, Tara would notice that Gram couldn't figure out how to get her out of this seat or that one, she changed her diaper every 10 minutes because she didn't remember changing it, she was trying to feed her every 30 minutes.  Poor Tara, but as I said, she is an angel ... she has the patience of Job ... she would say, "Gram, let's not feed her again just yet. I'm trying to spread her feedings out just a bit more."  As Mom got worse, Tara just got more patient and treated her more like one more child to watch a little closer.  Fortunately for her, the other children were getting older and could help her watch Gram!!!  (I will have another post later about Tara and Gram's "past relationship" so I won't go into that here.)

Sheesh ... back to the story ...  

Mom had always begged us to never put her in a nursing home ... no pressure, right?  Well, being the silly child that I always was, we had this EXACT conversation MANY times, "Oh don't worry Mom, we won't do that ... we will just move you in with Donna!"  "What if she is mean to me?" "Oh Mom, she won't be mean to you but if she is, I will slap her and tell her to stop it and she won't do it anymore!" "But you won't move me in with you?" "I don't think I will have an extra room in my house! hehehe" "Oh thanks, you little BRAT!"  Well, those were all fun and games at the time ... but deep down, I think we all knew that Donna would be the one that took care of Mom when the time came.  They always had a special relationship.  Donna and David had moved Mom & Dad in with them when Dad got sick and he passed away in their home and Donna always planned to keep Mom with her until the end as well.  We (the family members) and the doctors would say, let's just keep an open mind ... Alzheimer's is a different disease and we will just have to take it one day at a time, you can only do what you can do.  

Donna was trying to "accept" the things as they happened to her house and just say that she would need to be more diligent in following her around.  Then one morning before Steve came to pick her up, she got Mom in the bathtub and stepped right out into her room to get her clothes.  By the time she gathered them and returned to the bathroom, Mom had gotten out of the tub and was bent over it trying to clean it.  Donna told her to leave it alone and to come get dressed.  When Steve got home with her he called Donna and asked what Mom had done to her eye, it looked like she had a bruise beside her eye and on her nose but she didn't know of anything she had done to it.  All we could figure was that she had hit it on the faucet when she was leaning over trying to clean the bathtub.  When she got up the next morning, the bruise covered the whole left side of her face.  We were all in shock ... shocked that she could have hit her face that hard and then not even remember it!!   When we got to Aunt Dotti's, she went to the bathroom.  She didn't come out and I heard the water so I asked her if she was ok ... she opened the door and said, "I have gotten into something black and got it all over my face!"  She had gotten a washcloth and was trying to "scrub" the bruises off her face. OUCH!!  I explained to her that it was bruises and that she was only making it worse rubbing on it so hard. As long as we could keep her from seeing a mirror, she forgot it was there.

I think this incident was one that made Donna realize that she could not be with Mom every second of every day ... no matter how much she wanted to keep her at home, no matter how much she loved her, she was not super human and she couldn't do everything!

Shortly after that Donna had taken Mom to see her Geriatric Specialist, Dr. Monica Crane, and finally the "pivotal" comments/questions struck the necessary cord.  Dr. Crane asked, "I know all of your intentions are good, but are you still doing this for your Mom or are you doing this for yourself ... because you feel it is what you are "supposed" to do?  You need to be honest and ask yourself if this is what is still best for your mom."

Then the conversation came up again that we have faced before ... money.  We may not be "highly educated" but we are all business women who have been pretty successful in our careers and have since found that we are not the only ones who were shocked to find that there is pretty much NO financial help for elderly people in this situation.  I will also say that facilities which care for patients with dementia are not cheap!  We had gotten some prices together and figured how many months the money would last to care for Mom.  Donna told Dr. Crane these numbers.  Now I must interject that Dr. Crane is intelligent, wonderful, down-to-earth and so very caring!  She quietly said that although she realized she is not the one to make those decisions, with all due respect, she did not believe that our Mom would outlive her money.  She stressed that even though Mom was very lucky that we loved her enough to keep her with us in our homes as long as we had, we really were not doing what was best for her.  We were moving her around from house to house and she needed stability, she needed a routine ... unfortunately, that was not something we could give her and keep her at home with us.

When I found out that Donna had gone to visit some facilities, ALONE, I told her that it wasn't fair that she should have to do that alone and we wanted to be a part of the decision and help her. (I think older sisters sometimes feel more responsible than they have to and that is what makes the baby sisters "seem" spoiled, it probably isn't that we really are!)  I scheduled a day off work and we set up some places we wanted to visit. She told me that she had been to one place she really liked called Continuum Courtyard Senior Living and that we should go by and let me see what I thought about it.

Everyone kept telling us, "When you find the right place, you will know it!"  We saw some pretty places, not necessarily warm and comfy, but nice and pretty. We tried not to judge by looks alone and one big problem that we found on our visiting day was that most facilities did not have a "lock-down" unit for Alzheimer's patients and we (and Dr. Crane) knew that Mom would "escape" trying to find us if there was a way to get out.  At the few that did have a lock-down unit, the cost was greatly increased.  

Now, Donna is very particular, so if she liked Continuum Courtyard, I wanted to see it ... it is a fully lock-down facility.  She had been there twice already because she had gone back a 2nd time with Mom to see how she reacted.  I also knew that if it passed Donna's inspection twice then it had to be a pretty special place.  She was right ... it was a smaller facility (only 16 rooms, most were private but some semi-private), not as "fancy" as some but it was nice, very clean and seemed so comfortable and homey and everyone was so friendly. It was centrally located and therefore, pretty close to us if we needed to get there in a hurry.

When we left there that day I believed what we had been told was true, we would know the right place when we found it ... and I felt like Continuum Courtyard Senior Living was going to be the place for our mom.  To see this wonderful group of facilities you can go to their website at http://www.courtyardseniorliving.com.  

The last step was to let the rest of the family go check it out and give their blessing ... the vote was unanimous and we began planning the move.