She’s upset, confused, has had short-term memory loss, but is now having mood swings and calling me constantly from her bed. I’m terrified she will never leave this place and is slipping away cognitively. I’ve heard dementia can unveil itself when elders are in a new situation. My sister also has mental illness and they live together, very codependent, and I can’t count on her for anything. Not even a visit. Trying to keep my own sanity dealing with both of them. My heart breaks for my mom. She’s in a diaper and terrified to fall again. It’s a nightmare and my nerves are raw. Any advice would be appreciated. I am a puddle of tears every day and don’t know what to do. Thanks.
Don't think too far ahead. Be glad she is being taken care of for now and give Rehab a little time to watch for improvement. Don't plan on your sister's help. You do not need to visit your mother every day. Do the things that have to be done one day at a time. If your mother is participating in rehap and showing progress, he stay will probably be paid for for 20 or 30 days. You can re-assess the stiruation during that time.
Get sister to see her psychiatrist to evaluate and treat her own mental health issues. If sister is not competent to live on her own, she may need new living arrangements - based on doctor's recommendations. Be supportive of the plan of care set out for her. Decide on which types of help you are able to give her. Communicate this to her and stick to your decisions.
Make sure to connect with loving, supportive people on a regular basis. A listening ear, a compassionate heart, and the occasional shoulder will help relieve some of this stress.
First, put away your fears about your Mom. This is so that you can concentrate on the here and now. Listen to your Mom, really listen. Keep her focused on her recovery. Talk to her about what will be happening the next day. Talk about the future. Ask her about her expectations. Do not dismiss them. Talk to her and remind her of what she needs to do to get to those goals. (If she has a lot of pain, get the pain managed. It is very hard to concentrate or remember about getting well if you are constantly in severe pain.)
Talk to the PT to see if there are any exercises you can do with her to speed her recovery. I totally get that your Mom is afraid of falling (that is normal). Exercise with her to improve her core and her balance. Learn to use the gait belt. Don't think about the short term memory loss. If you are going through a traumatic event, you wouldn't behave rationally all the time either. Work with her so that you can transfer her to/from the wheelchair and the car so that YOU feel safe doing so. The PT/OT at the rehab hospital should be showing you this. Watch the PT/OT person work with your Mom. Watch how they handle her. Watch what they are teaching her. Try to reinforce those movements while you are there with her. Bring her some nutritious food from the outside. Foods high in Vitamin C are good.
Get a book and start a diary. Record her mood. Record what you see. Record what PT/OT did today. Record what happened today. With the entries, you can see if there are any correlations, and it is a great way to be able to see what has worked in the past and what hasn't worked. (BTW, don't expect "instant" changes...it might take 2-3 days or more before you see some improvement in an area.)
At the 2 rehab hospitals that my Mom attended, they both had social workers and patient coordinators (advocates?). These were the people who were non-medical, who could assist you in getting help and future assistance for your Mom. Record in the diary any pointers they have and use the diary to help you follow up on any actions you need to take. Don't rely on your memory. You may need to remember these things days, weeks or months later.
Do you have to do anything for your sister? If so, get a diary and record everything you need to do, or have done. If anything, this diary will be good if you need to get outside help.
And yes, a therapist to help you through this stressful time of your life is a good idea. The social worker or patient coordinator at the rehab hospital might have some names to try.
Diaper is good for now. However, if getting out of a diaper is a realistic goal for her, she will need to learn how to get from bed to toilet quickly and without falling. Remind your Mom of that.
Don't accept what the internet says as the absolute truth. What you read on the internet can limit your thoughts. Your Mom is a unique person. You are a unique person. Between the 2 of you, you can be part of the 5% that is the exception to the rule....but only if you listen closely and don't limit your thinking.
Don't pick up on her anxiety. You need to be the steady, rational person.
At 97, my Mom fell and had 2 screws put into her upper leg. Statistics would have had her dead within 1 year. After I got a different PT, she was able to walk with a walker without a gait belt, and she celebrates her 101 birthday this year. One year after the fall, she didn't remember much of her time in the rehab hospital except that the food was good (while she was in the hospital, she complained a lot about how bad the food was).
You can do this....one day at a time, one foot in front of the other....concentrate on your Mom. Put aside your own fears and limitations and work toward getting her back to where you and she want to be.
With Love Sheila S
P.S. and some ice cream
It sounds like your mother belongs in a facility with 24/7 professional care. Ask the rehab people for an evaluation as to where she should go. Obviously your sister is not the right person to care for her, and, I believe her care is beyond you too.
Do either of you have POA?
Emotionally she is still struggling and came home wearing incontinence briefs, using a walker and needing constant care, feeling helpless and sometimes, hopeless. I have tried everything but we just can't get back where she was.
My mom also fixates on things, has OCD behaviors and is getting to the point that she can't do anything for herself. This happens more often than you would imagine. I hope that your mom recovers. If I could do things over I certainly would never allowed her to stay in the TCU for so long. I would have brought her home and had the PT, OT done there.
Aloha!
When my mom broke her hip she was in rehab for a couple of weeks after surgery, but they didn't keep her long enough because of medicare limits. She was not ready to leave. She had two bedsores, was very unsteady even with the walker, and was afraid like your mom is. She also had memory issues that were much worse than normal. Part of that was from the medications after surgery, which take a long time to get out of the system, and part of it was the extreme stress. It gets better as they improve physically! After rehab, because she wasn't ready even if they said she could leave, we moved her to a very nice assisted living place for a couple of months. She could get continual care there if needed, and she could heal more before leaving. We didn't tell the staff that she might be leaving, as we didn't know ourselves, but it turned out to be the best thing. It gave me time to recover from my own trauma over the situation, and time to think and plan for the next steps. Because of the lack of good home care staff, we ended up moving her out of assisted living into an independent living apartment. She likes it there (it took a while), she helped choose it for herself, and the social life helps take the burden off of my to be her "everything." I struggled with a lot of guilt, but then I learned to tell myself, "I did the best I could." Which I did. It has all turned out very well, and we don't have nearly the worries about her safety. Best of luck to all of you who are going through this. It's really hard, but you will get through it.
P.S., Mom doesn't remember most of what happened during rehab.
My own mother has been living with me for 5+ years and as of last week is under Hospice care. I took it as far as I could without Hospice but she contracted a cough from a sitter and it has almost done her in.
So far, Hospice has been wonderful and they've gotten us everything that she has needed - supplemental oxygen, a nebulizer, diapers, pads, gloves, cleansing products, nurse visits, aide visits, 24/7 availability, etc.
It is exhausting work, but you will have no regrets. Having our loved one at home, in familiar surroundings goes a long way in keeping them comfortable and out of distress.
Be sure to get support for yourself via pastor, chaplain, other professional support; practice good self care, see your PCP, stay hydrated, eat nutrition conscious, exercise and get outside some each day..... Your mother is receiving care at the facility; so take care of yourself while she is there to build your own endurance.
1. Speak with her case manager and pcp re present concerns, and going forward options/prognosis...
This can change in a moments time...
2. Attend the " care planning" meeting most facilities have for pts. Get date and time from staff, case mgr
3. Be sure that she is being seen by facility social worker and chaplain
Speak with them about your mother's behaviors and changes you are noting.
4. Establish some manageable visit schedule, keep visits short and quality focused:. speak with your mother ( if she is able cognitively) about limiting phone calls.
* If she has dementia or other cognitive impairment, she will most likely not remember calling you, hence the repeat repeat repeat calls.
Start exploring with her PCP and facility staff your limitations in caring for her at home and your sisters illness;. Start to consider options for possible placement for your mother and/ or other choices that will accommodate her " safety" and well being as well as your own well being.
Practice deep breathing.....
Do not feel guilty about decisions that may need to be made. Be sure that POA status is in place.
I know it’s not easy but hang in there. I did also find that my mindset affected her mindset. In other words, if I was calm, she was calm. It is an overwhelming situation, but it will get better. My mom is now more herself, and we are planning on getting her home as soon as she is able to. Much luck to you.
If you believe in God hear some good words. YouTube has so many talks which will strengthen you.
Depending on your schedule generously share time with Mom. Puzzle/cards any board games or groom her if she is interested or listening to songs together. Just be there.
Take time for yourself too. Trust caretakers to do their job. Communicate with whoever is available. May God bless you and strengthen you. Anything is possible though God.
I will say that my mother has improved, compared to where she was right after her accidents. Enough that she's living by herself, but she needs a lot of help. It took about a year and lots of doctors appointments to get her here. We are also aware that we can't do much until the next time she ends up in rehab and we can only hope the next time won't kill her.