It’s so ironic. The “experts” think Dad is worse off than my sister and I feel he’s doing. The same experts think Mom is doing much better than we know she is. Argh. I think this concept of “baseline” needs to be explored more. I’ve noticed that medical professionals don’t really listen to family members when we tell them what the patient was like BEFORE the crisis/surgery/etc.
^^^ This. 100% agree.
They didn’t want to listen when I tried to explain my mom’s baseline before a hospitalization 2 years ago - but turns out, it was irrelevant in her case. She never regained anything she lost while being hospitalized, other than the ability to walk a little bit (but not on her own or without a walker). She went from fully independent but with minor memory issues, to fully dependent (and incontinent) with horrendous memory issues. It’s probably good that I was hopeful for her recovery at the time, otherwise I’m not sure I could have taken care of her 24/7 for the past 2 years.
Just needing a safe place to vent. There is a new DON at my moms facility and communication has dropped to zero. My dad is suddenly getting bills for monthly MD visits and no one can tell us why. It doesn’t seem to be procedure. Then today I got an email asking me to sign consent forms for home care. I called the home care company directly and it turns out a nurse practitioner saw my mom and ordered another round of PT/OT because she fell last week. My mom can’t follow directions, won’t use the assisted devices, and we’ve been down this road with PT twice this year. I told the home care case manager that I wasn’t going consent to services. She agreed it was pointless and would only agitate my mom.
My father is going off the deep end about the facility and while I’m upset about lack of communication, she’s well cared for and peaceful. We are close to needing hospice so the last thing we want to do is move her in this state when she’s well settled.
I’m going to see my parents next week and will be requesting an in person meeting with the DON. Praying we can all get back on the same page about my mom’s plan of care and regular communication.
Thanks for the ear.
@momofsenior sorry about the communication issues and you are probably wise to hold onto the current facility if hospice is on the horizon.
Has anyone ever used a mediator with their parent’s ALF? Your issues may not have reached that point but I am alone and there have been some difficulties lately. I am always feeling scared they will kick my mom out. I would love an advocate to come with me to meetings.
@compmom- sometimes geriatric care managers will attend meetings with families and may help with advocacy, gracious suggestions, etc. Advocacy can make a difference in tweaking care offered; results are trickier to obtain if institutional protocol is being challenged and almost impossible if the requests involve services or procedures that are above the level of care they are licensed to provide.
You have been a strong navigator on your mother’s behalf and I understand wanting an ally, as well as another voice and set of ears in the room. It is so much to process and can help with a fresh look at things, as well as to dilute prior tensions. All the best.
I am mainly dealing with social worker and nurse who press hard for memory care and an executive director and nursing director who don’t agree and seem peeved about our efforts to investigate MC. The executive director has apparently taken it personally. I simply said “you have a great model here, which honors privacy appropriately for assisted living, but we feel our mother may need a different model at this point. Nothing against this AL.”
They responded that we have a “misalignment of perception” and cite the fact that my mother plays bridge.
I don’t need to detail what I am experiencing every day but just for example, answering the phone with the tv remote so no one can reach her, calling me 10 times for the phone book (she meant the old yellow one from 10 years ago) and looking all over for it, thinking it is fall, telling me she will disinherit me if I don’t bring her checkbook (many times on phone) when it is on her desk (I got another one for me), asking continually what the colostomy bag is, and putting earrings on thinking they are hearing aids. Her memory span, like many, is about 30 seconds and is documented in the medical record. She has a diagnosis of moderate/moderate severe and her orientation score was 1-2 out of 4. Etc.
Now, many people in her AL are compromised cognitively but her difficult personality does make it a bit harder. I just had her MD start her on low dose gabapentin. I can manage her, mainly with humor or always making sure she knows I am her “assistant.” She’s the boss! (Last week she commented “not really” which was pretty astute of her!)
My main issue has been activities. I have to take her. Their policy is that an aide asks and if there is a no, they have to go away. I tell her about an activity happening and suggest we just go see and then she does it, sort of. She gets the time mixed up so sometimes I call her. One person saves her a place for dime black jack and helps her but she forgets to go unless I am there or call.
Today she tried bingo but put the chips across the BINGO at first 
Her best friend from the past whispered to me to please seat my mother elsewhere because she did not want to help. Others are wonderful , as I said, and help her.
We need something in between AL and MC. I found a really small place in over the state line that looks wonderful, in a town where she had a summer house. We’re getting there.
It just seems there must be someone to talk to and help, and I haven’t found them yet! Hope for the same for everyone!
My goodness, ever since my mother was admitted to hospice (living in my home still, but I am enjoying all the support team) she is doing better and better each week. I will be surprised if she does not get removed after the first 90 days! It is just bizarre how she was sleeping, literally 18 hours straight and 23 hours a day, and now with each week going by she is sleeping less, and not the 18 hours straight. Lewy Body is extremely frustrating in it’s inconsistency, every time you think you have a plan or a routine, it changes. Makes my head explode (mind blown.)
Hospice does amazing things. I think a lot of us have parents who go on and off. Glad they are helping!
I want to thank you all for the hospice palliative care suggestion in this thread! It has been a huge help to me and my 90 yr old dad in caring for my mom. I posted several months ago but need to do a refresh on background…
My mom has Parkinson’s dementia (she knows who we all are and can carry on a normal conversation but her short-term memory is shot) and she has incontinence issues and frequent UTI’s. In January, she went into the hospital bc she had a fall and could not move. She was there about a week with low magnesium and a UTI. She had to go to rehab bc, in the hospital, she couldn’t even get out of bed she was so weak. So make sure if a loved one is getting weaker and/or more confused to get them checked out for an active infection. With mom, it was hard to tell bc she is naturally weak and confused from her Parkinson’s disease.
After two months in rehab (and a second UTI midway through rehab), she was discharged and the next day she was noticeably weaker and more confused. You guessed it - a third UTI in three months. After talking with her GP when she finished her third round of meds, we started her on antibiotic suppression therapy to help prevent recurring infections. We were also able to get her set up for hospice palliative care in the home after she finished her three weeks of transitional home care post rehab discharge. She is still a lot of work, but this has helped tremendously with keeping her in the home.
I don’t always come in this thread bc most often I want to just veg out with reading/posting on other CC threads and not be reminded of my overwhelming responsibility of care to both my elderly parents. I have to go back a few pages and see how you all are doing.
@“Cardinal Fang”, condolences on the loss of your mom.
@powercropper, your earlier post brought me to tears. “No Regrets.”
@compmom, I think I remember you mentioning in an earlier post about having A-Fib and that you don’t take any blood thinners. I worry about mom with her long history of falls and being on a blood thinner. There was also a forum that you said you check out for people with A-Fib that has good info and I was wondering what the name of it is.
To everyone else on this thread, I feel your pain when things become overwhelming at times. Thank you for the chance to lurk when I’m too stressed to post but want to feel as if I’m not alone. You all help so many more of us than you’ll ever know!
@rjm2018 I have afib every three years so far. I have dramatic episodes with heartbeat around 200 and bp very low which land me in ER and hospital. My mother has it continuously, and doesn’t even feel it. There is a wide variety of experiences with this 
There is “paroxysmal” which is what I have, and “lone afib” which means in the absence of a heart valve issue (mine is “lone” but my mother has a valve problem). All of this affects treatment.
Once I hit 65 my CHADS score went from 1 to 2, which means the recommendation is blood thinners https://www.mdcalc.com/cha2ds2-vasc-score-atrial-fibrillation-stroke-risk (Your mother’s score on that would be a 3)
But there is another CHADS score where my gender and age are still okay https://www.mdcalc.com/chads2-score-atrial-fibrillation-stroke-risk. (check your mother’s score)
My argument, aside from infrequency of episodes, was that my score should not go all the way from 1 to 2 just because I had a birthday. I maintain I am 1.2, not 2!!
None of this is especially relevant to your mom so sorry, just explaining the way things work for me.
This is the site I look at every once in awhile http://www.afibbers.org/forum/index.php I take magnesium and drink low sodium V8 for potassium, and do Tai Chi.
I am unable to take the meds like Diltiazen or beta blockers due to low bp. Is your mom on any of those?
Can she switch to a different blood thinner? (Make sure it is one that is reversible.)
My mother also falls a lot (recently broke pubic bone falling on hip) and has huge bruises. However, when she went off Coumadin for 5 days for a procedure she had a pretty bad stroke. So it’s a choice between two bad things.
I am convinced that all the little brain bleeds she has are causing her dementia and are caused by blood thinners.
But there isn’t much we can do about it given the stroke history after getting off blood thinners for that one short time period.
It really depends on how often your mother has afib, whether she has high blood pressure or congestive heart failure or a valve condition, and even her stress level. I would bet that blood thinners are the least of a whole set of evils.
@compmom, mom’s been on Eliquis for several years now. Her AF is continuous and she has mild to moderately high BP, no hx of CHF or valve trouble. Right now she is off her BP med (Verapamil) and being checked twice a week by the hospice nurse and we are both happy with her BP numbers so far over the last month.
One of the reasons I asked about the blood thinner is that the doc in rehab suggested maybe she could go off it d/t the fall hx. I didn’t care for the idea too much bc there is no guarantee that she would not have a stroke and be in even worse shape than she already is. Thank you for pointing out the reasons why you have chosen not to go on them. It makes good sense in your case, not so much in mom’s case so I’m glad I didn’t bite on that suggestion. Thanks for all the links. I’ll be checking them out.
Honestly doctors are constantly asking me if we have considered taking my mother off Coumadin.
And at least three times I have stopped a doctor from doing so.
When I tell them she had a stroke after 5 days off their jaws sort of drop and they say “Oh” and look kind of scared.
She just had a colostomy which we agreed to ONLY if they could bridge the lack of Coumadin with heparin or luvinox.
Taking my mother off blood thinners would disable or kill her so the falls and bruises and little bleeds and dementia are all unavoidable.
Sounds like your mom is the same.
So I’m hoping someone here has suggestions for my mom. She just turned 90 and still living at home but my siblings and I (4 of us) are thinking we need to have discussions on her living alone and her needing help. She used to be a nurse so with any medication she is prescribed she will read the side effects and decide they’re too harmful. She does take her blood pressure meds but refuses to take anything to help with her arthritis. She reads nutrition labels to the point that anything we suggest is too high in sodium, fat, sugar, etc… Doctor has told her not to worry and she needs to gain weight. We just recently had an episode that she left tea kettle on while she went outside and pan went dry and caused smoke detector to go off. We would like to keep her in her house but I’m thinking we need to have someone come in and cook, help with her meds, etc… She is the type of person that is very hard to please and doesn’t think she needs help. I’m not sure where we start and what we should do. How do you find someone who is capable and trustworthy?
I work as a RN in a rehab/skilled care facility and I see lots of situations like those posted on this thread. H’s parents are both 90 and dealing with greatly declined health (they live many states away but one son - a pharmacist, is close and oversees) - one at home with care coming in and meals on wheels, and other in skilled care.
‘Balancing’ the health issues and trying to prevent a distressing outcome. The mental and physical decline issues. The strain on families and finances.
I do see better results with hospice patients having pain medication regularly administered with Ativan as supplement/boost - not Ativan alone. Agitated state to be headed off/avoided.
I’m so glad I figured out where to get to this thread with the forum redesign!
I’m visiting my parents and things are a train wreck because my alcoholic father is threatening to pull my mother out of her memory care facility. They have gone through many changes but from what I can see, they’ve been positive. She’s well cared for, comfortable, and very settled. She’s the beginning of stage VII so extremely confused and non verbal, so any changes to her routine are extremely upsetting to her. I tried to explain that to my father and he exploded at me that he’ll do whatever he wants. I’m my mom’s health care power of attorney but have no access to any of the funds to pay for her care. There is no way I could bring her to my home even with full time caregivers. I’m at a loss. When my dad is sober he’s mentally all there. When drunk, which is the majority of the day, he’s a raging lunatic. (Part of why my mom is in a memory care facility in the first place.).
Has anyone here ever tried to get guardianship over their parent when their other parent was still living and controlling the funds? Would my mom be cut off financially if I sought guardianship? (H and I simply can’t afford both college and keeping her at her memory care and again, I wouldn’t want to move her now).
I’m at a crossroads with my father as well. I’ve taken decades of his abuse and I have hit the wall. Just can’t keep putting myself in the crossfire. I’m finding an al anon support group when I go home. I need it.
Ugh @momofsenior1 That’s a tough situation. Does the MC have any suggestions? Can they invoke any kind of state regulations, like they cannot discharge her to an unsuitable situation??
He wouldn’t bring her home, but move her to another facility. If he was wanting to bring her home we’d be at an attorney tomorrow.
@momofsenior1 random list of possible resources:
- attorney
- domestic violence support organization (shelter, coalition, whatever you have locally available) – if not an elder abuse situation, they may still be able to steer you to something helpful
- your state or local government elder advocacy department
- https://adultchildren.org/
- is there anyone your father listens to? another family member, physician, religious leader? would you be able to trust someone to be an ally?
- your father’s physician? sounds as though he’s in awful shape as well
Do tend yourself as much as you can. Sounds like a horrible situation.