We're about 12 years in with my sweet mama on her Alzheimer's journey. I think we can all agree this is a horrible disease that's hard on the family as well. Although my mom has 24/7 care (her baby sister cares for her during the day), she is starting to become more anxious than ever, especially during times of sundowning. She constantly asks to go home (and she is home), to see her mom & dad (passed 28 years ago), her brothers and sisters, etc. Nothing I've tried or said comforts her. She asks the same questions about 35-50 times per evening. When I go to leave, she always asks if I'm coming back tonight. This breaks my heart. She knows she's in good hands with my father who she's been married to for 59 years and keeps telling me he takes good care of her. I'm there with them for a few hours every evening 6-7 days a week (after working my full-time job), and on Saturday I'm there for most of the day after doing their grocery shopping, prescription runs & banking. My brother comes into town on Sundays for a few hours to help dad with her. I'm looking for a way to comfort her anxiety. She's on an anxiety meds, gets some time outside when the weather is nice, etc. My leaving leaves me feeling guilty, and by the time I get home to my husband, I'm physically and emotionally drained as well. Answering her questions honestly, telling her she is home and telling her that her mom is in Heaven, and telling her that I won't be back until the next day -- breaks my heart. Seeing that she is not comfortable no matter what I do or say is wearing me down. She constantly says she's bored (even though I've provided lots of activities) or lonely. After 12 years, you would think one would know how to comfort those who we know and love dearly. Suggestions appreciated.
Sending hugs your way...
Sometimes medications stop working and a new medication or dose has to be tried.
Answering ALL questions honestly is sometimes not the right thing to do.
"Therapeutic Lies" often come in handy.
Mom and dad went to the store....mom took dad to the doctor...mom and dad are at the movies....
Many times when a person says they "want to go home" they do not mean a place. They mean a time. A time when the felt well and safe. Home means safety to many people. Try telling mom that she is safe, she is loved and she is alright. When you tell her this hold her hand and use a nice quiet lower pitched voice and see if that helps.
It sounds like you have a good support system.
Do not feel guilty when you leave. Reassure yourself that you did everything you could to the best of your ability and you have nothing to feel guilty about. (Try this..look at what you and everyone else is doing as if you were an outsider looking in...do you see anything that could be done differently? anything you are missing? I bet not, so don't make yourself feel guilty. If you were in your mom's position would you be happy with the care that you are getting? If so, again you have nothing to feel guilty about)
Sadly, there is no "owner's manual" for AD caregivers. It's all on the job training. The book should be helpful.
1. Music is often helpful, especially songs she knew earlier in her life.
2. Many people with Alzheimer's need more sleep in order to have the energy to relate. My wife, who is 9 1/2 years into Alzheimer's still relates remarkably well, but she sleeps 13 hours each night (from 8pm to 9 am). Not sleeping appears to be a problem with your mum. Perhaps medication would help.
3. Trying to explain to those with advanced AD that someone has died or that they are "home" is unlikely to communicate to them. You have to try to get into their world and then communicate in that world to them. Sometimes this is called "therapeutic lying" but it is more therapy than lying. Perhaps you could answer their question with a distracting question (e.g. "Your mother was a loving person wasn't she? Tell me about her?)
4. Reading simply stories or watching understandable tv programmes often helps. Have you tried music or ballet on Utube?
I hope some of these suggestions help.
Love and Prayers
Half a dropper of oil under the tongue works wonders
He needs a break! I think it best you move them to AL if at all possible or hire someone to stay with them a few hours each day. I'd feel more guilty about leaving him with her. At least you get to go home and escape. Thank you for all you do!
I'm in the same delima and have sciatica, herniated disks and knee issues on top of that and can't hire anyone now(due to the Covid-19)! Its extremely difficult. I used to walk with her to the park but now due to the tear in my knee, I can't! I try to keep her busy with dancing musics for her to exercise, or I ask her to write sentences, names of her kids or a letter to someone and that's good for her memory. Also folding laundry or cooking with me(making salad or frying something next to me(but supervise) helps her to be occupied and feel helpful. They need a scheduled routines. That way they know what is expected daily so they don't get bored. I don't know about your mom's capabilities but I ask my mom about certain chores like vacuuming her room with a light weight vacum. She feels she has accomplished something and makes her feel happy after. I remember her neurologist told me not to do everything for her. Ask her to get involved. It's a good excercise for her brain and body.
You can't be honest about everything with them. Your conversation with them is completely in another world! White lies are the key to calm them down but always with the hope and calm and loving ways they feel better. If she repeats something over and over again, try to distract her with some activities or a happy show on the TV/YouTube like dancing or singing ones. Good luck...I hope I helped some🌺
God bless🙏
Grace + Peace,
Bob
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