Keeping it brief I hope. 91 yr old mom needs help getting to bed, but when I tuck her in she gets up 3-4 more times for water, a piece of bread, potty, etc. I feel she's afraid to go to sleep because she's afraid of dying alone. We're also dealing with sundowning. I know she's getting closer every day and hospice is coming to evaluate her for care. Hubs and I can't leave her alone and it's putting added stress on us. Should I just suck it up for whatever time she has left or are there things that have helped others that I might try?
I would discuss this with your mother's doctors to idea what to try. Some can be helped and some cannot.
You say that you "feel" she's afraid to go to sleep and to die alone, but perhaps it's you that has that fear and are projecting it on your mom. Just a thought.
If your moms care is getting to be too much for you, your husband and your marriage then you may have to look into placing her in the appropriate facility. Hospice can help you with that if needed.
I would start though with talking to her doctor about prescribing a medication that might help her sleep better.
Not only do I know her brain is broken, I also know that her heart is broken, and her spirit is broken. She has confided repeatedly that she IS afraid to die because she believes my dad is mad at her because she fell asleep and was not with him when he died. She also thinks that her sister and brother will make fun of her because she is still alive and they died before she did. Is it irrational because of her "broken" brain? Yes, I know that very well. Does it make it any easier to see her struggling and want to do anything possible to help her? Facilities that she can afford within an hours drive are full due to staffing issues. Hospice has offered limited help with better hygeine care (two times a week).
Her doctors and I work closely to monitor her mental health and have tried multiple antidepressants, non addictive sleep aids, and anti anxiety meds to no avail.
I wasn't looking for judgement. I was hoping for a bit of encouragement and ideas that maybe someone who has lived this kind of life might have to help. My deepest apologies for not including all of the details of what all has been tried since I was trying to be brief with my question.
Until today, this has been a helpful and encouraging forum.
they are trained in this
tell them all you’ve said here
maybe your mother needs calming anxiety tablets
they can support you all well
speak to them
I read your expanded response. I can see your frustration. You are looking for a way to calm mom's anxiety.
I don't know why you are avoiding non-addictive sleep aids. At this point in her life, I don't think that is a concern.
For sundowning, and her reluctance to go to sleep, you might try keeping the lights on, not insisting she go to sleep, but let her stay awake, with TV on, until she falls asleep. Yes, you may just have to "suck it up" as you put it, for the time she has left. Can hospice provide an overnight aide to help her in and out of bed?
I too tried multiple anti-anxiety meds for my husband, without much success.
Here's what worked best for him: Trazodone before bedtime has a very calming effect, and is very safe, and non addictive. I have now added a second medication, Depakote. Together, these will put him to sleep in 30 minutes.
I wish you well. Keep in mind, as difficult as it is, this too, shall pass. Go ahead and spend time with your mother, even if it means late nights. Instead of seeing it as a disturbance, look forward to spending quiet nights sitting by her side and talking, sharing memories, reading to her, or watching a movie together.
This will disrupt your usual routine, but only for a limited time. Find time during the day to nap. For a year or two, I slept until 10 am, because I was up most of the night. I was exhausted and it was horrible. The medications helped a lot, and now we are on a good sleep routine.
Consistency in her routine is another tip for dealing with a broken brain. Whatever you do, keep it the same every night. Break her current habit by replacing it with something new. She likely feels compelled to repeat this sequence of events every night.
Mom is distressed and I think it might be a good idea to have a clergyman come in and comfort her that Dad is not angry with her, all is forgiven and she will be too.
It's not easy for someone who is mentally challenged to make sense of anything at this point in life and asking for forgiveness does help not only them but yourself also.
How many times do we get short tempered from burnout and the situation we're in? We need forgiveness and have to accept that we've done our best and we must go forward and know that it's out of our control.
I really never had the chance to mourn,so busy getting everything done for my mothers passing. I'm happy for her and knowing she isn't suffering is the blessing of relief I needed. The priest, mom and myself all prayed together and mom became aware that she was going somewhere special and that she was happy and content.
She can have medication for anxiety while on hospice. From what I’ve read on this forum and my MIL’s experience it seems it’s very common. Hospice is not going to be super concerned about her maintaining an alert mental state, medications to keep her comfortable are the order of the day. Talk to her doctor. If she is religious at all she may be interested in talking to a chaplain. Hospice should make this offer.
For you and your husband—boy, I can relate to the feeling that you’re trapped in the house. You can take turns leaving for errands, etc. Hopefully he doesn’t mind staying with her to give you a break. This isn’t a complete solution. You need to be able to get out together too. For that you will need someone to mind her to give you some respite. If her needs aren’t complicated, perhaps a relative or friend would be willing to come occasionally. Or you can hire someone. I see messages on Nextdoor all the time from people willing to do this sort of thing. Hospice has a respite program but like every healthcare service in existence, they are understaffed. I would not expect them to fill the need exclusively.
From what you’ve shared in your profile, it might be very difficult to predict her life expectancy. Don’t think you’re letting her down if you just can’t do this until the end. You can still be a loving presence for her if she’s being cared for by the professionals.
She needed such high doses of several meds. I didn't like it. But, she was suffering without really knowing it. And it was so sad/hard on her, us, and the caregivers. Hospice couldn't believe the meds weren't helping, and that she was so agitated. They said they don't see cases like hers. I don't know if this is the case with your Momma. But, something you may research.
Blessings to You, and Your Family.
We have people here who are believers in one god and another and people who don't believe in any god.
A very diverse group, Johna, and welcome.
You need support staff for your own well-being, not just Mom's. Give her whatever will make her comfortable. Consider gummies or even a little alcohol if she is so inclined, as long as there is no risk of adverse side effects or medication interactions. Would Mom like a monitor, so that she knows you will hear her if she calls you?
Encourage other family members to call and visit at scheduled times. You need a break and Mom needs the love and familiarity of close family.
Sundown Syndrome - when folks get more agitated and confused in the latter part of the day. Non-medicine approaches include turning on more lights, maintaining a consistent environment and maintaining a consistent routine. Medications that help her to relax will help with the anxiety and agitation. Hospice and/or her doctor can prescribe those medications. I am not a fan of alcohol or CBD gummies since it is hard to get consistent results and/or consistent products/dosages.
Fear of being alone - similar to when a child delays bedtime with frequent requests. Again consistent environment and consistent routine help. Ask doctor and/or hospice about medications to help her relax and sleep. If you have a good number of people to help you, ask for a
"helper" to stay with her in the later hours of the evening to be a companion. Or pay for a sitter for this time period so you can get the sleep you need.
Fear of dying - when somebody is anxious about either the dying process or what happens after death. Hospice can help with answers about the dying process and helps to make her more comfortable through the process. What happens after death is more of a spiritual concern. Reach out to faith leader in your community to make visits to talk with mom and help answer her questions. Many churches have counsellors and pastors that are more than willing to provide this service.
My mom is also afraid of death. Even though she raised us to believe in and practice our faith, she refuses most references of a religious guidance now. I have found nothing that resolves her fear. No magic words or technique. I do often say reassuring words to let her know I care about her fear. I say things like “ it must be hard to think about that, do you want to talk about it, is there anything I can do to make you feel better?” I often hold her hand or touch her arm or shoulder. Eventually, she lets it go for a few hours but returns often to the topic. I have searched for written material to help with this, including reading short stories to her about those who have had near death experiences. I have stayed away from anything overly preachy and stuck with those that seem more non-judging as to the cause or meaning of a near death experience. My tips are not “solutions”, but rather things that help temporarily in our situation and bring her some peace during times she can think of nothing else.
Best wishes to all of you. You are doing a good job in trying to help your mom through this stage of her life.
* You say she is afraid to die ...
then you say
"I feel she's afraid to go to sleep because she's afraid of dying alone."
I would ask you to explore how you feel about her dying as this could be more about you than her. I understand it is stressful for you ('us') although I do not know who 'us' is - you and your mom or you and your husband?
Comfort her as best you can during the days.
Try massage at night to calm her down / relax her. (Foot massages are good; as are head, hands).
Ask MD about medication to sleep more through the night.
I wouldn't say 'suck it up' - I think you need to take care of yourself as best you can / get help-ers in or consider if placing her in a facility for 24/7 care might be best at this time.
Hospice may / hopefully, provide more support and guidance for you.
Gena / Touch Matters
Even if she is not a person of faith, it might provide some peace and comfort, even in people with Dementia.
When Mum's time came, she was no longer afraid because she was so very tired and hadn't been aware for a long time. However, she did get very agitated and I'm grateful for the very strong drugs which calmed and soothed her and took away the pain.
When Mum cried out for her mum, I sang songs I remembered Nan singing, and that helped more than anything. I'm talking about my mum's final days. I couldn't have sat by her bed for hours otherwise, and I don't think that anyone should be there 24/7 in the normal day to day - it's unsustainable.