I’m really not quite sure where to begin with this story. In this year of never ending painful happenings my mother has now peacefully entered heaven.
I tell this story in case it will help those of you who might go through something similar. I honestly cannot believe I was so naive about preparing for death or long term care but I was. In March, I received a call that my mom’s kidney failure had reached a point that if she didn’t agree to do dialysis she would need to go on hospice. They told me that maximum she would have two months to live. I really couldn’t believe it because at Christmas, mom had still seemed so strong, but I trusted the medical diagnosis.
I went to S.C. and tried to talk Mom into doing dialysis and even tried to tell her that she could change her mind if she didn’t like it, but she was convinced that this was going to be the way her story ended and that she was ok with it. She continued to do amazingly well making me think that the decision for hospice was rash and that there was still time to do dialysis. Every week hospice would call and report that there was no change in her numbers. Somewhere during that time my mom’s right arm started to jerk uncontrollably. It caused her embarrassment, and a great deal of unrest. She simply could not get peace or rest. The hospice staff told us it was a build up of toxins in her body because her kidneys weren’t flushing everything out.
We visited and talked and she always sounded happy and seemed to do well except for the jerking of the arm.
Then, I got a call from the manager of the independent living facility that mom was living at saying that she really wasn’t doing well and needed more help. I called mom and she sounded the best she had in months and I thought, “Ok. I’ll go visit this weekend. Maybe it isn’t an emergency.” Several hours later the manager called me again and told me that mom had fallen.
I made arrangements to get there as soon as possible, but in the meantime, my daughter, a friend, and actually the manager (who seriously is a hero in this story) went to visit her and face timed with me. Mom looked terrible. They couldn’t decide if she had a stroke or not and told me I had to put her in hospice in the hospital and that she had less than a week to live.
I was frantic and couldn’t decide if that was what was right. Mom never wanted to die in a hospital! What should I do? I called back hours later and they told me that she was doing better–in no immediate risk of dying and when could I come get her…..what???? How does a story change that quickly? I mean, great! She is doing better, but….the emotions running through me were pretty wild.
I realize between what the manager had said to me the day she fell and now what has transpired at the hospital that she will no longer be able to stay by herself. What are the options?
I had always thought that assisted living was the step after independant living. When I had originally looked for places for mom–all the assisted living places had nurses at the end of the hall. So I thought that instead of a nursing home this was the next step.
Well, I was wrong. You have to be able to still do many things for yourself before they will take you. For example, feed yourself, dress yourself, help get yourself to the bathroom etc. In short, if someone had taken the time to explain all of this to me months before, she should have been in assisted living instead of hospice. Seriously, no one would take her. (I guess once they let you in they will care for you, but they won’t take you if you can’t do certain things.)
One day I talked to someone early in the morning who said as long as she could feed herself they would take her. I was very honest with what my mom could do or not do and begged her to please not waste my time so I could move on to someone else if they wouldn’t take her. They told me they would come evaluate her at 10 the next morning. At 3:30 the nurse walked in and I could tell by the look on her face that they would say no. I explained what I had been told and she just shook her head. They didn’t officially call me until 6:30 that night to tell me no. I really unleashed. I was angry that they told me one thing, but it wasn’t true and that I was missing spending valuable time with my mom having to navigate a system that had rules no one tells you about. She mentioned another place that might take mom. She said she had a friend over there. I told her if she wanted to redeem herself in my eyes she would call that friend and find out if I would be wasting my time to visit. She promised she would.
Here were my options they way I saw it.
1) Move my mom to Chicago. I was worried about how she would make the trip. Would it be too hard for her? Then, how would she react to it? The reason she didn’t live here already is that she refused to go that far north. Hiring an ambulance to bring her up here was astronomical.
2. I move down to S.C. to stay with her indefinitely. That was a hard choice, but the one I was leaning towards. I knew I would have to probably shut down Overshadowed and at this point the doctors are telling us it could be months.
3. My aunt said she wanted to take her into her home. I thought about it and might have considered it more, but I just thought I should be the one to take care of her and have that time.
4. Hire full-time care. Thinking about it–but found out that it would be about 16k a month. I wondered if I could arrange people to help me and pay them in shifts to make it more doable.
5. Nursing Home. 9k a month. and I just felt like mom wouldn’t say it, but that she would really resent me doing that. It would have broken my heart.
I really had a melt-down while I was thinking this through. I got so much great advice from many great friends, but it was so difficult. One friend said, “God will show you the next step and you will get clarity.”
I wrestled with God all night.
The next morning I asked the representative from the company that had “led me on”if she had contacted her friend and if they thought it was still worth it for me to visit. She replied “Yes, Go ahead.”
When I walked in full of hope I started with the fact that I was sure Brooke had contacted her and told her about my mom. She looked at me quizzically and said, “No?”
At this time I felt like I needed to hit something. The representative from the current company said, “Let’s talk. Tell me everything from the begining. ” Somewhere in my rant she stopped me and asked me why the case worker at the hospital had not listed my mom on the NIV list.
My mouth dropped open in stupidity as I asked what she was talking about. She asked me why my mom wasn’t doing rehab and said that it was standard for people to go through rehab after a hospital visit. Rehab then gets them strong enough so that they can go to the coveted assisted living. She told me medicare would pay for 20 days which would give me time to either pack and go live in S.C. or make arrangements to bring my mom up here. She told me to get my case worker on the phone. At that point she talked my case worker through putting my mom on the list and at the end of the call I had 7 offers of people who would take my mom! Seven. After days of begging people to take mom–now people were asking me to take her. This saint of a women wasn’t done. She gave me the name of a facility that she would send her mom to if necessary and told me to head over there before I did anything else.
After spending time at the rehab center they told me that my next job was to get my mom evaluated by a therapist and according to what that therapist said they would take my mom. They had a case of COVID so they told me to go home and come back to see my mom in ten days.
I went back to the hospital where the therapist got my mom to stand and take a step. Finally, she got to get out of bed. They had been telling her she couldn’t for almost a week at that point! I noticed that her arm was completely at rest. I asked the Doctor about it and he said perhaps a medicine had been causing the twitching. What????? (They had taken her off all her medicines because basically they were just waiting for her to die.)
I honestly felt the clarity that I was doing the right thing. I told my mom that my daughter was going to be there in the next day or so. I told her they were going to move her to rehab the next day and that I would be back the following week.
She looked at me and said, “I love you, sug. (Short for sugar) Be safe.”
The hospital called me in the middle of the night to tell me that she had passed away.
The Lord is my Shepherd.
I shall not want. He maketh me to lie down in green pastures. He leadeth me beside the still waters. He restoreth my soul. He leadeth me in the paths of righteousness for His name’s sake.
Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.
Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.
Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord forever.
Am I angry about several things that happened in my mom’s final days? Yes, but I read this passage and see my mom walking with Jesus, her shepherd. He is leading her beside green fields and flowing water. She is not afraid. God had prepared a table for her and she is forever with Him.
Thank you, God, for your faithfulness and your answer for where my mom was going to live and who was going to take care of her. Give her a big hug from me.
For those of you who might be in my shoes one day. Don’t trust that everyone has your best interests at heart. Find out now what each of these medical branches does in your area and plan how it is going to get paid for. If it isn’t too late I understand that there is a long term health care policy that is available.
In memory of Rachel W. Ruffin. Beloved mom and sister and Grandmother.
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