My visits really seem to upset my mom. She has vascular dementia. She cries the second she sees me and grabs onto me and sobs through our time together. Says I need to save her, move in with her.
The memory care facility is a nice one. My parents chose to live there, in the independent living area, but are declining so rapidly they could not keep their place independently, even with 24hr caregivers. Very erratic behaviors and eloping, using hallways as bathrooms etc. Doctors are trying to figure out what is happening with my dad’s fast decline. Both parents recently moved to memory care, within the independent living apartment facility they moved to in November. They are both rapidly declining, but in different ways. Both later stages. My dad has lost almost 30% of his body weight in spite of being made to eat regularly. They don’t know why.
Both are miserable and I have so much guilt that I can’t help them. Visits are excruciating because my mom doesn’t understand anymore that I have a job and two kids at home to care for. She begs me to taker her with me, but they are far past the point where I can continue to help care for them at home. It became scary and unmanageable when we are doing that.
Looking for advice on visits and whether they are helping my mom or making it harder for her. I currently see them three times a week.
Thank you!
If your parents are being well taken care of and you like the facility that they're in, you really can't ask for more than that.
Your moms(and perhaps your dads too)brain is broken and will never get better. There is nothing you can say or do that will change that, so you must just come to peace with that and try and make the best of the situation, without jeopardizing your own health.
I wish you the very best, as you navigate your parents new normal.
What helped our situation was simply time. As my mother’s dementia advanced, her pleas came to an end.
I visit my mother about once a week now. Three times a week wouldn’t have worked for either one of us.
I’m so sorry this is happening to you all. It’s brutal.
Obviously you don't want to abandon them, but cutting back a bit is probably a good call. I found with my mom that no particular behavior lasted too terribly long as her vascular dementia progressed.
I'm glad your dad is on hospice care now; they were wonderful with my mother who had their services for 2 months before she passed. I urge you to ask for calming meds for dad now; 5 mg of morphine and/or .25 mg of Ativan is an extraordinary combo to keep the elders calm and not agitated or in any pain at all, w/o overmedicating them to the point of being zombies.
If you want to visit but mom gets upset, I suggest you visit from afar. Don't let mom see you, but you get to cast eyes on her at the same time. Set it up with with the staff that you can come by during an activity or a meal when you know where mom will be at a certain time. Zoom/Duo calls are also a good idea that the staff can help arrange.
I know how heartbreaking this stage of the journey truly is. From one daughter to another, you have my heartfelt condolences. Try not to feel guilt about what's going on; know that your parents are being cared for to the best of your ability in a safe environment at the MC, and that it's the DISEASE that's causing all this pain and chaos, not your folks. What's left of them is a husk; dementia has stripped away their real personalities and left you with this: a mere shell of who they once were. May God bless you and grace you with the strength and courage to withstand this decline until He chooses to take them Home to be at peace, finally.
It is so hard to know what to do but realize it probably changes frequently for unknown reasons and there is no known right action.
The weight loss is alarming. Your dad may be grieving their situation on some level. So sad.
As miraculous as the human body is, it is meant to decline and nothing you do will stop that.
Perhaps the guilt we feel when we can’t help is a cost of being human. No matter what may have gone on before, we do want out loved ones to be safe and happy and know they are loved. At some point you will separate and that will give you some peace. You are a loving daughter.
My mother went through that awful stage of asking me to save her and take her home. Medication helps! It took a lot of trial and error to get her on the right meds, but it finally worked. She worked her way up to 100mg Zoloft once a day, and 50 mg Trazadone up to 4 times a day. That would make a normal person drowsy, not her! It kept her just right. Seroquel works too. Try a baby doll. It was enormously comforting for my mother! Ashton-Drake.com has dolls specifically designed for dementia patients.
Watch Teepa Snow videos. She suggests holding the patient's hands, making loving eye contact, and showing deep concern. Tell her to take a deep breath and you do it with her so she can see you. It actually helps both of you! She is scared and confused. Show her love and compassion and understanding. Agree with her-- do not use logic. Say, "I really understand what you're going through. I know you are trying very hard. You are doing very well. Let's try to figure this out together." But, of course there is nothing to figure out, you are just trying to soothe her. Be careful not to make promises, E.G. "I'll take you home." She'll hold you to it! Just look into her eyes and show deep concern. Lots of deep breaths and hugs! "How about we have a nice cup of coffee/tea." My mother responded to these tactics most of the time. This stage lasted 6 months for my mother. The medications helped a lot. I was able to wean her off them as time went on. As far as your father is concerned, perhaps he is just ready to go. I've seen others (mostly men) in the nursing home just give up and lose weight. His spirit may simply be calling him to come home. You are doing everything you can. Do not feel guilty. God bless.
IMHO You don't have to change your scheduled visits. If your mom is agitated in your presence, adjust your focus to other aspects of her care.
I visited my mom every day, seven days a week for eight years. Six years in her home, 2 years in memory care, 1 month in ICU/skilled nursing. If she was up and about, I would sneak into her room and check her supplies and tidy up and avoid her seeing me till I could exit. If she had refused to get out of bed (threw her teeth & cursed at the aide!), I would coax her up, clean her up and direct her to go down to breakfast and high tail it down the hall and out the security doors, before she could even remember that I was there. When I started hospice for her and she had 5 x week aide: I switched to three times a week. ICU and skilled nursing: glove up, mask up, put a gown and face shield and pop in to see how things were going. Adjusting for COVID lockdowns and false positives that would have me cancelling my appointments and worrying about taking my COVID test, only to find that her second test was negative.
My point is that it can be a long journey and managing YOUR strength is vital to you parents' care. Keep your schedule because it works for you, but adjust your visits to monitor their needs.
Teepa Snow has some good videos on YouTube, with the titles of “Making Visits Count”.
There are quite a few parts to this series, which you can search for, on YouTube.
Here is just one of the parts:
https://youtu.be/gCAAy53cZDQ
1. Discuss your concerns with mom’s physician. He/she can prescribe medications to ease the anxiety.
2. Make a giant poster of you with your family to hang in their room(s). On the poster, write “Stacy loves you. She is at home with her husband & kids and will visit again on Tuesday” so they know you’re coming back.
3. Create another poster about their life, written in short, easy-to-read bullet points. I included the topics such as: You are originally from (town/state), You now live in (state), You and Dad live here together, Dad was (career) and you worked as (a homemaker/career), You have xx children: (names), You have xx grandchildren (names), Stacy visits you every week, etc. Or include favorite TV shows, hobbies, etc. The list also gave the staff something to talk to your parent about.
4. Bring familiar items from home: a favorite blanket or sweater, a CD/CD player to listen to favorite songs, etc.
5. Keep favorite snacks on the nightstand – in a shatterproof container.
6. Togetherness is comforting for couples. Find out how often your parents can see each other. Are they in the same room, on the same floor, etc? What does the staff do to bring them together?
7. If your folk were pet lovers, get them a stuffed animal or robotic dementia pet (Amazon) to provide comfort.
8. Trust the process, even though it is hard!
9. Modify your visiting schedule to allow the folks to settle into their new environment. The facility will contact you in between visits if necessary.
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