I brought my 92 year old mom home to live with me in Waldport, last March. She lived by herself in a big house in SW Portland, where she had lived with her mom and then her whole married and widowed life. We grew up in this 2+ story house. She had close to 80 years of memories in that house.
Needless to say, she was not happy at suddenly having to live in a different location and under a different set of house rules. The transition was a struggle for all involved, but we accomplished it.
I had offered to bring her to live with me in 2008, after she fell and hurt her back. She ended up in the hospital where she eventually agreed to have Kyphoplasty surgery on her spine to fuse some troublesome and osteoporatic vertebra. She refused. She said she would ruin my life. Instead, I made her house safe with grab bars and handrails on the stairways and cleaned up the clutter enough so that she could get around with a walker when she got out of the rehab facility. I took over handling her affairs with a power of attorney she granted while in the hospital.
She was determined to continue living all by herself, like she had done many years before. We worked out a system where I could order her food online and it would be delivered to her. She couldn’t drive anymore and eventually we found a home for her little pickup.
During the subsequent years from 2008 to 2012 when I brought her to live with me, I noticed that her memory was going. She didn’t remember casual things like what my kids were doing or whether a bill was paid. She didn’t remember if she had eaten or what she had eaten or what day it was. If you asked her, she would say she had eaten or whatever it was, but when pressed for the details, she could not supply any more information. I think she said things that she thought we wanted to hear. She had people from the church look in on her periodically and my sisters and I would call her up to check on her.
I noticed that she got upset really easily over small things, like the garbage bill. She thought she was being charged for the neighbor’s garbage. She was pretty good at keeping a log of when she ate and when she called for garbage pickup, but she would lose track of where she put the notebook or couldn’t remember what day it was.
She would get her wires crossed periodically. She couldn’t understand why she wasn’t paying property taxes on a piece of property that was sold back in the 70′s. Then she swore that she still owned it and that it was stolen from her. I went to the county and made a copy of the sales of that parcel. I had the deed where they had sold the property and had received payment.
No amount of cold hard facts could change her mind. She would keep bringing up the subject. She didn’t remember that we had resolved it the time before. Finally, when she would start in again, I’d tell her it was taken care of and get her onto another topic.
During this time, I didn’t really know what was wrong. It was really frustrating that she could not remember things and even worse when she would get stuck in one of her ruts. She had the property taxes deferred as part of Oregon’s program, and whenever they sent a letter, she panicked and would call me up very distressed.
Now she could remember everything that went on in Congress! How she hated the Republicans and loved the Democrats! Whenever she could pigeon-hole us, we would get our education on what was happening in the government. I dreaded those conversations as much as the ones she had about her negative perceptions of my dad. These conversations were like a stuck record. Over and over and over again.
About the last 6 months, I noticed that her food orders were declining. She was not eating as much as she used to. Eventually, over Thanksgiving in 2011, she fell again and ended up in the hospital with a raging bladder infection. I received the call from the Life Alert people and dropped what I was doing to go to Portland to take care of things.
The people at the hospital did not want to release her without some sort of care. Also, she had antibiotics to take. I was going to be in the Portland area for a few days, so I could oversee her meds, but I wasn’t staying at her house. I stayed in Wilsonville with my sweetheart.
I knew there was a problem with her mind when she could not understand about her medicine. Her neighbor, also her god-daughter, was a school teacher. Giving simple and clear instructions is part of her job. She had kindly picked up the medication and delivered it with the pharmacist’s instructions. It made perfect sense to me, but Mom just could not get it. Mom even wrote it down. As it turned out, after I left that night, she didn’t remember what day it was and she took some of the antibiotics when she was not supposed to. When I returned the next morning at pill time, she was confused about whether to take them or not. Finally, I told her not to take them unless I told her to. I could see, then that she needed more help than she was letting on. Thank goodness she only takes one pill a day for her Thyroid.
Before she was discharged from the hospital, I lined up with the Visiting Angels agency to have a person come out 1 day a week to help her with chores, meals and cleaning. Mom fought the idea tooth and nail, but I didn’t back down. Mom liked to talk to the lady that came out but would not let her do more than clean up the kitchen and bathroom. Mom kept everything and everything lay on every possible surface and floor around the house. She refused to let anyone touch it because it might be important and heaven forbid if someone was to throw it away!
Her days were numbered. She was able to go back to her regular schedule, which was watch CSPAN day and night, eating bananas as her primary source of food and cooking very little. We actually discouraged her from cooking on the stove. She had ‘killed’ most of her pans by setting them to boil and falling asleep, allowing the food to burn. She also heated with a wood stove and electric heaters. We made sure she had an easy supply of wood on the porch so she could start a fire without too much effort. She tended towards staying up all night and sleeping in the daytime off and on. So many times, I’d call her up for her food order and she didn’t know what day it was or whether is was morning or night!
About a week into January, I got another call from the Life Alert people. This was late at night. She had fallen and broken her hip (and had another bladder infection). I rushed into Portland again, only this time I knew that there had to be a new plan. I started talking with my brother and sisters about options and alternatives.
She was lucky and only broke the femur and not the hip joint. The surgeon put pins in her thigh bone and the neck of the hip bone. This time, the hospital social worker wanted a care plan. I lined up for her to rehab at the Marquis in Wilsonville, which was convenient for me and a nice place. Everyone said that she could not go back to her home and stay there alone. Period!
The next few weeks were crazy, with many trips back and forth, calls, research and conversations about what was the best plan. Since none of us lived in Portland, it was not feasible to oversee home care for her there. And it would have cost about $15000/month. I had contemplated moving in with her, but that would mean I would have to give up my work in Waldport. I would not have an income source and it would be hard to be with my sweetheart. Also, I knew I would go nuts caring for her, especially since there would not be anyone to give me a break.
After much soul searching and discussion, my sisters and I agreed Mom would get the best care living at my house.
I was frustrated with my brother. I could not get an answer out of him. He just gave me the pat Abraham answer: “Let it unfold the way it will” as he was driving to Arizona with his girlfriend.
That wasn’t good enough for me. I like a plan. I like to know where I am going, how I am going to get there- at least within reason. I had already given this a lot of thought and run many scenarios in my mind – another talent of mine. I had decided that I would give Mom my bedroom because it was the biggest room and had a bathroom very handy. I would move either into Kelly’s room or onto the porch that I planned to enclose. It turns out that I moved my office into the new room created by walling in the porch and I set up my bed in Kelly’s room. It was closer to taking care of Mom.
I would hire my sister and another person I knew who was an experienced caregiver and I would pay myself a salary for nights and taking care of her finances and other affairs.
Just a few days before I was scheduled to bring Mom home, my brother surfaced and put in his two cents. He wanted to have her go to a local assisted living home. It would be cheaper than what it would cost to hire the caregivers. I was not pleased. Why didn’t he tell me when we were in the planning stage. I had already started the carpentry on my porch and I had the stamp of approval from the Marquis.
So I ignored him, after agonizing over whether I had made the right decision or not.
Elder care was totally new to me. I didn’t really know what to expect. I just figured that I could work it out. And something had to be done. A decision had to be made. Mom was drugged up at the facility and I could see that she could not really get better until she could get off the huge array of meds and start eating a healthy diet.
I talked extensively with the different therapists at the Marquis to get an idea of what kind of care she would need when she arrived here. This is when I found out about dementia. The therapist clued me in to the short term memory loss, the inability to problem solve, the lack of initiative and to prioritize. Physically, her hip that had the surgery was healing well. She would get more physical therapy to gain strength. Her vital signs were strong. Physically, she was healthy. It was her mind. She would require someone around to keep an eye on her all the time. She was not mentally able to take care of herself.
A couple of days after I brought her home, I had indigestion like I have not had in years! I threw up all night. Now I have pretty well worked past the germ theory, which was thoroughly taught to me by my mom. Instead, I have learned to ask myself what is going on that I can’t digest or can’t even swallow?
It turns out that even with all my careful planning, I did not fully realize the impact of the choice I had made. I had help, thank goodness, but the full weight of responsibility for my mom was squarely on my shoulders. And I would never have a peaceful and quiet house again while she was here. I had been preparing myself, but preparing and being immersed are two different things.
Once I understood what my body was telling me, I stopped throwing up and was able to get a little sleep. Next day, my stomach was really sore, a reminder of the change to my life I had just undergone.
The next few months saw marked physical improvement in my mom, but she thought that she would be able to go back to her house in Portland. That was not part of the plan.
By providing 24 hour care, I was spending thousands of Mom’s money every month. Payroll costs took a huge bite out of her savings every month. I worried a lot about how long her money would last. I checked into Medicaid, but Mom had too many assets to qualify. I had to spend them down. And so I was!
During these first few months, we worked through a lot of emotions, changes and I had to make a lot of hard choices and decisions. Mom didn’t like that I turned the TV off so that I could sleep at night. She was used to having it on all the time. She wanted to watch politics, but I blocked that channel on her TV. The OPB news hour is enough politics for me!
I started out being very easy going about her watching TV in the living room, but soon I had to change that. She would plant herself in front of the TV and refuse to move, be it to go to the bathroom and especially when it was bed time. She so ignored our requests that on several occasions I had to turn the TV off. This made her furious. I didn’t know how else to motivate her to do the things she needed to do. It was like she was a little child, again.
Then there was the power struggle. Our roles had reversed. I was the mom, now and she the child. However, I was her youngest and she had always controlled all of us. She gave the orders and we were supposed to obey. Now the roles were reversed. She felt like I was telling her what to do- which I was in as nice a way as possible. She would rebel, dig in her heels. I couldn’t reason with her. I would get frustrated and just walk away. In a little while, usually she would forget about the incident and I could cajole her into whatever it was she needed to do.
She also didn’t like Tom, my sweetheart. When she first arrived, l iet her commandeer the sofa. She didn’t just sit there in one spot, she had her papers, clothes, food tray and other items that left little room for anyone else. I didn’t put 2 and 2 together until she had made her nest on the sofa for a few days. I realized that when Tom came to stay, he would have no place to sit. When Tom and I talked about how having Mom come to live with me would affect our relationship, I promised him that he would have the sofa and the TV in the living room. I didn’t want to change his routine because of her. And I knew from her behaviors that moving her off the sofa when he came would cause a problem for all of us. So better plan ahead……
So the hard part came a couple of days later, when I realized what I had started, that I had to find a new place for her to claim. I set up another small futon chair with pillows and told her that this was her new place. She wanted to know why, so I was open and honest with her about the sofa being Tom’s place and sorry I had made a mistake in letting her think that she could claim that piece of furniture. She was not happy, but she relocated.
She let everyone know what she thought about Tom, though, when he came a day or so later. He slipped into the house in the evening after Mom had gone to bed. Now she would begrudgingly go to bed, but she would lay there with her eyes open, thinking. Tom has a smoker’s cough and Scooter, my Italian Greyhound, thinks Tom is his bosom buddy and abandons everyone in favor of sleeping on Tom.
I knew something was up when she closed her bedroom door. She had never done that. Next morning, she was all upset, saying Tom was going to make her sick, that he had pneumonia. I explained that is was a cough from smoking. That didn’t phase her. She had her mind made up. Later, when Scooter came in to sleep with her, she made the caregiver wipe him off with an antiseptic wipe before she would let him near her. I knew there was going to be trouble over Tom.
Mom was very good at meddling in her kid’s lives. She didn’t approve of my marriage, and even though she thought Tom was a nice man, she didn’t think he was good for me. I can be just as strong willed and I was determined that she would not come between Tom and myself. We had this conversation one day, not long after that. I waited until one of her more lucid moments and told her in no uncertain terms that Tom had every right to be here in my home and that she was not going to come between us.
Time has gone by. I have had to be strong and make hard decisions. I’ve had to withstand a lot of double talk from the caregivers, little dramas created by one or the other to stir the pot and get a little excitement. I was so stressed with the responsibility I didn’t get much sleep because Mom was up a lot at night. To begin with, the doctor required that she have support whenever she walked. I’d get up 2-3 times a night. As soon as she seemed stable and had her balance and would use her walker, I started letting her go to the bathroom alone. I still listened for her.
Another struggle we had was in getting her to use her walker faithfully. She had developed the habit of ‘furniture walking’, where she would totter along hanging onto furniture or the wall. This was one of the rules that we would not let her break. She tried to sneak around without her walker. In fact, when she was upset and distracted, she would forget to use it.
Soon after she arrived, I had to do something that would alert me that she was going to the bathroom during the night so I could give her the support she needed. She wanted to sneak from her bed and I would lay away all night listening for her to get out of bed. I had a set of small windchimes and attached them to her walker. She didn’t like that, because it betrayed her getting up at night. Also, the dog would sleep with her and when she would get up, he would come and get in bed with me. She would try to hold the wind chimes while she walked, but I always heard. She couldn’t understand how I knew she what she was up to. I told her I was psychic!
Then she had bad dreams. I’d be startled awake by cries and gibberish of a little child. Sometimes she would leave her room in the middle of the night, in a panic, saying something had happened to my sister.
There were the daily lives of the caregivers. One was having problems with her husband. My sister felt like her life was put on hold to care for Mom and was really put out about it. She didn’t like taking care of Mom, but she needed the money.
I had my own feelings. I was doing a lot: I had night duty, I was overseeing the caregivers, taking care of all the things that happen because of her new living situation. I had to be paid. I could not do this for free. I had already taken a pay cut when I delegated some of my duties to one of the employees at the carwash. I found myself not having time to do the things I used to get done. It took me 4 times longer to do simple tasks. I was constantly being interrupted to play referee with my mom. I had to be the sergeant when she dug in her heels with the caregivers. She was particularly cantankerous with my sister. I still had two months of the tax season and was fitting in tax clients. I had my hands full!
We had to tackle her house in Portland. The house was 2 full stories with a full basement and attic. At it was full of stuff from top to bottom! I dreaded the job of cleaning it out and getting it ready to sell. But it had to be done. I organized a team. It was not a task for one person. Everytime I entered the house, I felt overwhelmed.
We started clearing out the house in June and finished in July. By August, I had the house sold. Mom was furious with me for taking things out of her house. I brought down all of her papers, her ledgers and a bunch of her books and other things I could handle. The rest, we sold at an estate sale or gave away to Goodwill. She was really upset about what was happening to her house. She didn’t shed too many tears, but she certainly lashed out at me every chance she got. I felt guilty and sad. She said I was heartlessly destroying her history. She didn’t want anyone to touch her stuff, and it was heart breaking to have it gone.
She went into a depression. She still ate. We brought her meals. But she refused to get out of bed, do her exercises or anything . She refused to take a shower for 3 weeks. One caregiver was really frustrated with her and said she thought she wanted to die. Mom lay awake day and night, with her eyes open and staring off into who knows where. I seriously wondered is she had lost her will to live. She stopped being angry, but laid on the disappointment really heavily. I felt horrible for what I had done. But I didn’t know what the other choice was. Then she started saying she wished we had waited until she had died before we sold the house.
During this time, Mom was acting out a lot, especially about TV rights. She made it very clear during one discussion that we were too different to live together. She is a night time/ politics person and I am a daytime/no politics and find the good side person. She wanted her own place. I looked into the assisted living place, took a tour and had the evaluation nurse come by. At one point, Mom wanted to go there. She said she was upsetting me and was an undue burden. She didn’t like that she had to live within my house rules. She wanted her freedom and independence.
I was agonizing over whether to give in to her demands or to stick to my guns. I wanted to respect her wishes and have her be happy. At the same time, I worked during the day and needed to do things that made that possible. Otherwise I would not have a nice home for her to live in. In the end, I decided to respect myself and my needs, put them above her wishes. My house rules stood. She had the choice of staying or not staying.
About this time, I started asking my team of angels and guides to create a peaceful and happy environment and a win-win for all of us. A short time later, the caregiver with the husband problems quit. She just texted me about 5 minutes before she was due to come on shift and said she quit! I had a busy day planned and appointments for the next day. I had to cancel everything. I was not happy. In fact, I was down-right angry and hurt. Throw in a little righteous anger…..I would have liked a little warning……
I got a new team in place and shortly after that, I noticed that Mom was a lot more agreeable. She actually tried to get along and do what she needed to do. I also stopped trying to control the care situation. It was too much to maintain. Soon I noticed that the house was much more peaceful, Mom denied ever wanting to leave and wanted to stay here with me. She cheered up and became chatty with her caregivers. I would try to take some time to sit and go over things or ask her something about her childhood that was relevant to something I was pondering. I had gotten my wish. Thank you Angels!
I dont’ know how long this equilibrium will last. One thing I have learned- change always happens and often it is unplanned. My life turned upside down when I brought my mom home. It will turn upside down again when she departs.
You see, I’ve gotten spoiled. One of the perks of caring for Mom in my home is that my house is cleaned regularly and many of the meals are cooked. I don’t alway like what is cooked, but then I have a choice to make something for myself. And I have a dog sitter when I have to be gone for the day. And the dog and cats take care of Mom, too. Even though I took a pay cut from the carwash, I have additional income from her care. I made an office space that i absolutely love. The dog, cats and I spend a lot of time in the room that was once a porch. I had the money to replace my roof instead of just repair it after windstorm damage and had a tree climber remove several threatening trees. I even have started building up my saving account! I’d say it is a win-win situation.
There is always a blessing or something good that comes from whatever we do. We just have to look for it.