Debbie and her mom were recently showcased on WATE Channel 6 in Knoxville, TN in a special about Caring for Your Aging Parents.
See the news clip below:
Debbie and her mom were recently showcased on WATE Channel 6 in Knoxville, TN in a special about Caring for Your Aging Parents.
See the news clip below:
Move in date was scheduled for Monday, February 20th. Strange how you remember that date as if it were a day of mourning! Our Dad passed away in 1989 and the pain of that day often feels like it was recent but dealing with death has no "choice" involved ... the loved one has been called home and you must find your way to cope. Dealing with moving a parent from the home setting to somewhere else, whether that facility is Senior Living, Alzheimer's Care, Assisted Living or even a Nursing Home ... you have made a decision. That makes things more difficult.
On Saturday, David moved the furniture in for us. Of course, Donna had been shopping since the decision was made to find just the perfect things to put in her room to make her comfortable. Therefore, on Sunday Donna, Brenda and I went shopping to pick up a few more things we needed and spent the afternoon decorating her room. It looked so adorable ... A red and cream bedspread, coordinating pillows and window treatment. The wall decorations included black and white pictures of her, Dad and each of the 4 of us when everyone was young. Another picture of all of her grandchildren, one of all the great-grandchildren and then one of her, Aunt Lucy and Aunt Dotti (her last 2 living siblings at that time).
The closer it got to Monday, the greater the panic. We had thought this through again and again, we had talked to many people ... friends who have been through it, family members and even professionals. We knew in our hearts that this was the best thing. So why wouldn't those voices just go away and stop asking if I am sure we are doing the right thing ... am I being selfish ... what am I going to do if Mom cries when we take her ... OOOPS, there was the big one!
Monday morning DID arrive ... Donna, Mom & Tara began to run errands as if it were a normal day. Brenda & I picked up the last couple of things we had forgotten. We met them for lunch and then all went to Courtyard together.
The questions began ... Why are we here? Those are my pictures, who put them here? Why are my pictures on these walls? We tried to explain to her that she had been wanting an apartment to stay in while we went to work, this was the one we found for her. She said she never said such a thing and if she did, she didn't mean it and she was not staying there! Get her stuff and let's get out of there now. We just kept trying to explain how much better it was going to be for her to have someone to talk to, spend time with, etc. while we worked but that we would still be there every day. She asked if we brought her there to leave her until she died. We said, "Mom, we have never just taken you somewhere and left you alone and we will never do that. You know that we have to work and you don't like to stay at home alone, so we found somewhere that you can stay with friends and people to make sure you are safe while we work but we will be here every day. You will see us more than you did when you lived in your own house. (This is a true statement, it is just that she had lived with Donna and David and not in her own house for several years.) She sat there with tears rolling down her face and said, "I guess it will be okay, as long as God stays with me He will take care of me and somehow I will survive it."
These were the times that hurt like the worst moments at a memorial service, only you knew they would repeat over and over. She is like one of your children you are trying to rationalize with. You almost think she somewhat understands but you can't seem to quite explain it in a way she comprehends. This was the point when 2 of our Courtyard "angels" stepped in ... these two angels were the Administrator, Cindy and the Activities Director, Kathy. They joined in the conversation and made it more light-hearted talking about things they do, etc. Kathy asked Mom if she would go help her do something and of course, if she was needed, Mom went right along to help out. Cindy told us it was time for us to leave and we got our purses and left. We made it out of the building ... luckily, we made it as far as our cars before we broke down and cried ... and cried ... and then talked until we could see to drive home.
I'm sure we drove those "patient angels" crazy calling to check on our precious Mom ... but they hid it well. Dr. Crane was right in saying that we needed to make sure we chose a locked-down facility. We, and Courtyard (if they ever doubted it), now know that their security system is in great working order ... Mom tested every door in the place! She kept telling them that she needed to walk home so that she would be there when we got home from work or we would be worried about her ... they would tell her that we would be there soon but she would go in search of the next door she could find and try to get out setting off the alarms one more time! :-) Poor thing!
As long as they could keep her occupied, she was much happier. That made sense ... she had raised the 4 of us and one of us always brought someone home after school it seemed; she was constantly cleaning the house and kept it as spotless as could be. She helped us with all of the grandchildren and even helped keep some of the great-grandchildren until her dementia was too advanced.
We told them to do what they needed to do to keep her happy ... let her help them around the house. They started giving her "assignments" ... she helps fold towels, she sweeps the floor in the commons area, she loves to dust and water the flowers. She made the comment one day that she was the only one around there that had to work but most of those people around there were old and feeble and she guessed they just couldn't do it. We used to feel bad about letting her have a broom, but it was better to see her sweep than to constantly walk around bent over picking up microscopic pieces of lint.
By Wednesday, my regular 1/2 day off work to spend with Mom and Aunt Dotti, they said we wouldn't know how she was going to react on the first visit until we came ... since Dotti and I were together, we got voted to go for the first visit! How did we win the lucky straw? Yes, that visit was Day 1 nightmare all over again!!!!! She thought we were there to get her and take her with us. She was NOT going to stay there if I wasn't staying with her. How could I do this to her? Ummmm, Angelllllls, H-e-l-p! Kathy appeared from nowhere, "Miss Terri, can you help me get these drinks ready for snacks please?" "Sure" ... and we got the head-nod to leave. Back to the car to cry some more!
At that point, we realized, with the advise from all of those involved ... we (the children and Tara) had to stay away for a while to give her time to adjust. That adjustment period was to give her time to learn to rely on them as she had been relying on us for everything ... time to adjust to the daily schedule. We had friends and other relatives visit to check on her ... she handled that fine and they would tell us how she was doing. The nurses said that her memory and attention span was truly only about 2 to 3 minutes so they have really gotten good at distraction techniques.
So we got her moved in ... we survived Week 1 and made it through Week 2 ...
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.