Mom is 85, has lived in her home for almost 55 years, and has always been very independent. Last year she was hospitalized with a pulmonary embolism and also treated for a detached retina. Now, she is generally in good physical health, but suffers from dementia -- long term memory is great but short term is getting progressively worse and occasionally suffers panic attacks.
I'm her single son and have been her primary caregiver for almost two years -- managing her finances, making sure she has and takes her medications, doing yard work, grocery shopping, bringing meals, taking her to doctor appointments, etc. (all the stuff caregivers are familiar with). I’m so burnt out emotionally, mentally, and physically that I don’t know how much longer I can keep this up. My older (divorced) brother helps out some, but I feel like it is all on me.
We brought up the idea of moving her to assisted living late last year, but she wanted NO PART OF IT, so we dropped it. She also does not want any outside caregivers coming into her house to assist her. Nevertheless, I knew the day would eventually come when she would need help, so I did a lot of planning over the past year in preparation for this event including evaluating different assisted living facilities, putting her name on a waiting list, getting her finances and estate planning in order (including Living Will, DPOA), etc, so we would be ready when the time came.
This past summer after a panic attack SHE brought up moving into assisted living and wanted us to make the move before winter arrived. She said she would not fight us on this issue and if she protested, we should ignore her and continue with the move. This was a HUGE day for all of us!!!
Over the past few weeks she would ask when she was moving into her new apartment and I would show her on a calendar. On moving day, she was ready and willing to go. She has been in her new apartment for less than a week and every time we visit, her first question is always “when am I going home?” She gets so very angry with us and so worked up that we have to get assistance to calm her down. She cannot take care of herself at home and we can no longer provide the care she needs (even though she does not think she needs any care).
My brother has taken a more active role in her care now that she is in assisted living, but I still feel emotionally, mentally, and physically spent. I’m not sure if or when mom will accept her new living arrangements or where I can turn to for support/help for her or me.
Any assistance is greatly appreciated -- thanks in advance!!!
I dread going there too, I know what I'm in for. She will probably never adjust. She was very spoiled her whole life and got whatever she wanted. She was a bossy person and still is, except now I'm calling the shpts. But I still hate to be in charge of her. It is very uncomfortable for me. She just has to try to "make friends" and hopefully things will get better. But she is very awkward socially and now it is worse. Oh well, it certainly does help to vent. Stay in touch! and pray!!
We have work on not feeling much guilty over placing our parents in a facility, because ultimately it's the best situation for them. I've also learned that venting helps a lot! ;-)
Your mom's physicians may also have to experiment with different drugs to find the best combination for her. My mom has been on Seroquel and the Excelon patch since her diagnosis, the strength of the prescriptions have varied, however.
In 2013 I received a panicked phone call from a family friend that lives in my mom's development stating that my mom was "seeing things" in her apartment and was afraid. I called my mom and she confirmed the story. She sounded like a scared child. After breaking down for a few minutes because I didn't understand what was going on, I googled hallucinations in the elderly, as I simultaneously packed my suitcase to head home. Long story short, during an inpatient hospital evaluation, she was diagnosed with Lewy Body Dementia.
Since the "diagnosis", I've had caregivers check on her to ensure she was taking her meds etc., and would discuss the possibility with my mom of her moving near me into a senior development. She would come and stay with me a few weeks at a time, but it was very stressful. After 2 years, thousands of dollars in payments to aides, another stint in the hospital, me running back and forth home periodically, I finally put my foot down and told her we were selling her co-op and that she was moving into a senior "development" near me. I did not refer to it as an assisted living facility. By this time, she stopped resisting the move and was actually afraid to be alone.
She's been in an AL facility for three weeks now. The first night, my adult son and I brought her a new flat screen TV, and a few other personal items to make her feel as comfortable as possible. As we were preparing to leave, my mother broke down into tears!!! I have NEVER seen my mother cry before - EVER! I was so torn and guilt-ridden and didn't know what to do. We had the nurse to come in to calm her down, and we left. Two days later, she said she liked it better. She said that she thought we were putting her away somewhere where the "unwanted" go. At least twice a week since then, I've received calls from various nursing staff indicating that my mom said she wanted to go home, and could I speak to her and try to calm her down. One day, she even pulled her clothing out of the closet and started packing.
We are all still getting adjusted to the change...
Good luck abby33 and Susanbartusiak; take care of yourself!!!
Even though it may be hard to do, we are going to try and give it more time between visits and hope that she develops a new routine/attitude. The staff has indicated she is visiting the cafeteria for meals, regularly, and is venturing out of her apartment to sit in the main common area with other residents to observe, occasionally striking up a conversation.
Thanks, again!!!
I shared all of this to say that jeanngibbs has given you some good advice. She may or may not reach the point where she no longer asks to go home, but that is beyond your control. All you can do is take care of yourself and be supportive of her where she is which it sounds like is where she needs to be plus she asked to go there. People with dementia have a hard time adjusting to new locations and this is possibly what is going on with your mom. It is painful to watch a parent decline, but try to hold on to the good memories of her. Be glad for simple things like her still recognizing who you are.
It is good that your brother is taking a more active role now. Take this as your chance to recharge from being so drained.
My heart goes out to you. You are doing the right thing, and the thing that your mother asked you to do. It must be very hard to see this result.