My Mom has "cognitive decline" termed by her Dr, but not termed Alzheimer's. She is on Aricept and Mematine but was living alone and able to take care of herself until what we believe was a fall that she didn't report. She went downhill quickly forgetting to eat and take her meds. We got her to the hospital where she was for three days. She started eating and of course they gave her meds. She went to rehab late today and I don't have a clue as to where to start. Her diagnosis is Failure to Thrive and I know they are going to give her physical therapy. She is miserable, lonely, crying that she just wants to go back to her house. I know others have been through this and just need advice on how to deal with her heartbreak, as well as how to work through the system to get information in a timely manner without being seen as a "bother" to the staff. What should I ask? I already saw and corrected that the hospital sent over a list of meds that included two that she hasn't taken in years. No one had asked me and it just happened that I went to the front intake desk and saw the list. I just got through having to be forceful in the hospital since they were not giving me any information unless I paged the Dr four times before he responded (and that was in three hours - not as if I expected him to respond in 15 minutes), found the nurses were not giving my Mom her glaucoma eye drops at night even though I had gone over her medications with her and an initial Dr.
So, where do I start to be Mom's advocate without becoming an adversary to the staff? I have no clue about the process and everyone seemed to be too busy to take the time with me.
Your mother feels lost and scared. She’s your mother and this is very personal and hurtful to you, but her reaction is not unusual. She will accustom herself to the situation. Things won’t be sunshine and roses, but if you keep things upbeat and cheerful, it will make things easier on her. If you feel sad and teary, wait until you leave her presence to give into your emotions. Tell her she can come home when she feels better and the doctor says she can leave.
Good luck. Hugs and God bless...we’ve all been there.
Take a notebook in and take down notes and names. Watch her Med list like a hawk! As you’ve already found is a huge potential screw up.
Hopefully you already are on her HIPPA list and POA?
I think the key is in your first sentence- advocate. I believe that taking care of your mom is definitely in the will of God. I found that keeping a notebook, writing everything down and keeping it organized and detailed... with “next steps or questions” was a huge help to me. It is a huge plus for your mom that any institution staff see you there and keeping abreast of her and her situation - (by the way, way to go on the two medications!)
When my mom was in a SNF rehab, I spoke with the Dr on staff, nurse manager and the caregivers regularly... asking questions and getting clarification on things. They are busy, but it’s important to stay on top of what is going on with mom’s care, otherwise, I don’t think it’s good. For me, I focused on her physical therapy, nutrition, and daily care. For instance, what do they cook/palatable for mom/can she eat, staying hydrated, having something in her room to encourage her and keeping her comfortable (sufficient blankets and pjs from home), and her activities .. No worries regarding being adversarial. Just establish communication with staff.
Regarding heartbreak, I hear you and I struggled with that! It was so hard on my mom as well as me. My 92 yr old mom was hospitalized and right afterwards, ended up staying in a SNF for three months for rehab. I would break it down to smaller pieces.. encouraging your mom by telling her to take things one day at a time and when you see her improve in ANY area, encourage her in it. We cannot lop out large chunks of time and know what will happen next. None of us can.. just do your best and the Lord will honor that. He is the biggest advocate in this- you just show up and watch Him! I prayed for you- that He would encourage you and your mom, and place the right staff and people in your path! Many blessings to you in this journey. You are not alone and are among many who understand and applaud you along the way!!
Wait your turn, Unless it is an EMERGENCY, wait until conversations/ paperwork is finished (stand slightly to the side where you can be seen) and polietly and quickly explain what you need/want.
Thank everyone for everything they do. It doesn't have to be a big production, just a quiet "thank you". Occasionally commiserate with the staff. Again, it doesn't have to be a production, just "sounds/looks like you are having a rough day".
One other thing I do is help the staff out as often as I can with my loved one. Does he need water? I find out where I can get water, juice, etc. Any non-medical supplies, like tissues, giving directions to new visitors, anything I can do to help out.
All of this goes a long way to helping you be a good advocate for your Mom, you have details and a good rapport with the staff. At this point, they should listen and work with you. If they don't, make waves and also look for a new location for Mom.
This is hard. Harder than you can imagine but you will prevail.
Often with dementia, you have extremes due to personality changes inherent in the disease. Some have the crying. Some have profound anger and aggression. I don't know which is worse. My heart goes out to,you and your brother.
Come to grips with the fact that psychotropic meds may be necessary. My mom very angry very aggressive. Abilify has made HUGE difference. Yes. Seroquel, Abilify, respiridal come with black box warnings about using in elderly with dementia. But it is about quality of life.
You want a care meeting. Both you and brother need to be present.
You sound like a really good advocate. You can do this. Hard. But you can.
My mom was in the failure to thrive thing too. I have an idea what you are going through.
Tell your mom you're here to support her in any way you can. That we will 'figure it all out', 'I'm here with you', 'I love you', etc etc.
Reassurance, reassurance, reassurance. And hugs, lot of hugs (if you guys are like that with each other). Reassurance and physical touch.
Are you her legal Medical POA? Introduce yourself that way if you are (if you aren't, it should be ok anyway)
Go to the HEAD nurse and tell her the medical things....she can get it changed in the system.
Then go talk to a Social Worker about your mom's situation. Their job is get people out of the hospital asap. They cannot force her out unless you have a place for her to go IF you are moving out of her home.
You ask her what your options are....
Be calm, KIND, and kept it short....and thank them for 'all that you do'.
Appreciation always helps.
All the best to you and mom!
When I was born the doctor went to the wrong hospital and a nurse delivered me!
Mom's in rehab now and I have to say, they are genuinely interested in doing what they can to help her get well. So they seem to welcome suggestions or questions much more than the hospital did. You mentioned memantine and Aricept and that was one of the first things the NP asked me about as my Mom also took both. The NP "had a heart attack" (her words) when she saw Mom's med list and said it was no wonder she was falling. Mom was taking other meds too but the NP suggested stopping the memantine immediately and possibly discontinuing the Aricept at a later date as I told her she had trouble adjusting to both meds. This is the first time in months that my Mom's personality seems to be coming back - yes, she still has major cognitive issues, but she is finally accepting that she can't live on her own anymore and isn't fighting us like she had been.
Like you said, everyone always seems very busy in these facilities and it's not always easy to voice your concerns. But there should be a case manager for your Mom who you can call to either set up a meeting or talk to about the things you are questioning. As others suggested, having a care team meeting is also helpful to meet all the people involved and get your questions answered. Best of luck to you and your Mom - I hope things work out for you both.
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