How to know what's best?
At this point, care for my grandmother has been narrowed down to 3 options, one that we've mostly ruled out, and the other two my mother and I don't see eye to eye. 1. Memory Care AL in her home town in Virginia (where all the family lives but none will commit to visiting regularly) 2. Memory Care AL where my mother and I live in California (where we could visit any time day or night and would definitely) 3. In-Home care and shifts between the two of us while my grandmother lives in our home (my mother's home). My mother and I are at odds on deciding between options 2 and 3 (I like 2, she wants 3). I've posted before about my grandmother, but short version is that she has dementia (most likely Alzheimer's) maybe stage 4-5, she's a high fall risk because she shuffles, gets tired, but also has moods where she refuses to use her walker. She has high anxiety and some depression that was never treated and now is, of course, much worse. She needs 24/hr watch and standby assistance, and I'd say she has wild delusional episodes 5/7 days a week. She tends to be very mean to my mom. Meds have helped some, but having never taken a medication in her life, most of the side effects turn out worse than the behaviors. My mother is convinced that in a home, my grandmother will decline a lot faster, will be scared every night because she doesn't see her family, and won't get the specialized attention that we can give her. Also, my aunt died last week and my mother thinks its too traumatic to move my grandma out of our house. I think that we don't have the skills and patience, my mother has health issues with her lungs and works full time, and I cannot maintain being primary caregiver any longer. (I'm only 29 and trying to start my life) I also feel as if we could all maintain better relationships if grandma goes to a memory care place, and that she will have the structure and activities and socialization that she needs. I know that no one can say what to do, but opinions??
1 - she will be more likely to use her walker when many others she sees daily do so
2 - your mom has health issues that will get worse due to stress & lack of sleep
3 - she will be in the 'system' & trained professionals will be able to advise you on her treatment & meds
4 - in homes staff check on residents every hour at night & does your mom think she can do that without compromising her health
5 - your grandmother will be alone with care giver for hours at a time but in a home she'll have organized activities such a musicians who come in, bingo, arts & crafts - my mom gets 10 a week not counting religious activities - do you think you can do that?
6 - try the home because you can always take her back to your home but that would be bad all around - you will have a better idea of care level needed when she is closer to you both
She will wind up in a facility sooner or later because they get too hard to handle.
Option #2.
stressful task anyone can take on. I did it. He could walk, feed himself and he was continent, but he was out of his mind and
there was nothing I could do to help him. I had him in 2 physciatrict facilities and neither one helped me at all. The first one took him off his antidepressant and anxiety med and put him on resperdiol. All this did was make him drool continually. I brought him back home and 3 months later I had to put him
In another facility because of his constant repetitive actions for
Hours at a time. I honestly didn’t know he had enough strength
to do the same thing over and over for that long. I have the upmost admiration for people who can give up years of their live to take care of their parents, but I was broken after 15 mos of it.
I really don’t know if I will ever recover fully from it. I was 59 when
I did it. You are way to young to put your life on hold. This is your
time to start living. At 29 you really can’t appreciate how precious
one day is! I’m 60 now and let me tell you everyday you lose not
Living life to the fullest is a day you will never get back! Good luck to you.
I'm 49 and I feel like my mother has stolen my life from me. (As awful as it sounds, I feel like I'm in limbo waiting for her to die.) How do you think you are going to feel at 29, and just starting?
My instinct is to tell you to go get your own place, even a little studio apartment somewhere, and then see how your mom feels about caregiving. Because she's going to have to get used to you leaving home sooner or later - probably sooner, if you have the goal of starting a family. I know that you want to support your mom, but if she wants to do this largely out of guilt, then showing her how hard it's really going to be might end up being the only way to convince her grandma needs to be in a care facility. You have a right to your own life....and so does your mom, for that matter.
Here is where we are at now. My mom is stage 7 and had been on Hospice for a year. She was first diagnosed in 2009, so you can tell your mom how long this commitment can be.
My mom is totally incontinent... She wears disposable briefs and I change her every 2-3 hours... My husband never had to do intimate care... One of our daughters comes if I can't be here for a changing. Mom lost control of her hands a few years ago, so we have been feeding her since then. First she could do finger foods, then lost that control too. She has a delayed swallow so we have to make sure she swallows each time we give her food or drink... We use verbal and manual prompts. Luckily she has a strong swallow so no aspiration yet. Mom doesn't talk much. She rambles all day, and sometimes all night. I think she understands somethings and she does make comments occasionally that totally fits. She has recently lost the ability to smile... That is so sad for us. Mom lost the ability to walk about 2 years ago. She is a dead lift from bed to wheelchair to recliner and back again... Everyone she needs to be changed. A CNA from hospice comes twice a week to help give her a bed bath. I always help to because she gets super agitated if I am not there. My husband and I take turns going to family functions outside of our home. We have 4 daughters that help us occasionally, but I would never want them to put their lives on hold for caregiving at this point in their lives. They do keep me sane by bringing the grandkids to hang out often... They love hanging here and we do lots of fun crafts and science activities.
Make sure your mom fully understands the commitment. Placement in a facility does not mean you don't love Grandma, nor is it something to feel guilty about. Both choices are fine... Each has a different commitment involved.
It sounds like your g'ma needs a good neuro psych eval. Just because she hasn't taken meds does not mean they will not work on her. My mother was in a geripsych hospital for almost a year before they got her the right treatment. She never took meds before either. Risperidone, an antipsychotic, and also, later, an antidepressant made a world of difference for her, and now she is calmer than she ever has been.
I do believe your mother's thinking is affected by the loss of her sister, your aunt, and my heart goes out to her and you; however, not getting your g'ma the right treatment and setting is not an answer.
I am not sure you are right about medicaid. Please get professional advice about that.
She needs 24/7 care and you and you mum, even as a team, can hardly provide that. Your mum has a job and health issues, so any shift isn't good for her, you need to get on with your life, and g'ma's needs will increase.
Have you consulted an attorney specializing in Elder Law to explore legitimate options?
Ema don't make any assumptions about money - talk to people who can give you definitive answers and constructive advice. Do you mean that your grandmother's occupational/widow's pension makes her ineligible for Medicaid? - I'm not sure you can "surrender" the rights to a pension in order to apply for Medicaid anyway. Are you getting professional input?
It's never quite right to think that you, as family members, "have no choice but..." If God forbid you and your mother didn't exist, your grandmother would still need care and still have the assets and income she has, and a way would have to be found.
There hasn't been any ill-advised spending going on, has there? I know your aunt was very ill - was her illness also very costly?
Whatever the situation, your grandmother needs care, your mother isn't strong enough (for very good reasons) to provide it, and you have a right to your life too. There will be a solution, keep looking.
My deepest sympathies and condolences. I am sorry to hear about the passing of your aunt. I know it is a difficult time. It is very hard to make decisions when faced with a recent loss.
Try to give your mom a little more time. I know its also extremely hard on you too. You are an amazing young woman for doing as much as you have. But like you said, you too have a right to start your life.
I hear your concerns. But hopefully with more research there will be a good memory care place that will giver your grandmother the proper care. I hope your mom will come around to this decision.
Thinking of you and your family during this difficult time.
Much prayer, that's how to decide whats best. Best wishes in this season of life. Remember we all will be there.
May God bless you with wisdom in this decision.
Countrymouse, they set us up with a case manager upon that discharge and we went through about 5 facilities in a day and none of them seemed appropriate. She is active and likes a lot of people and things going on. She enjoys watching people and making drama out whatever they are doing. Thing is, she is also very clingy to 1family person at a time and when that person is gone, she's usually having a meltdown (Somehow I’ve become that person). Besides, everything is out of budget, we live outside San Francisco, so I don’t really know how we’re going to do any of this.
I think your instincts are correct.
I'd suggest you and your mother make a shortlist of facilities - say three to five - and physically go and visit them. Your mother seems to be anxious about two things: 1. natural guilt over "being the kind of daughter who won't even take care of her own mother, tut-tut, what kind of person is she..."; and 2. your grandmother being stuck in a chair, medicated out of her mind and left to rot.
The key thing is that your grandmother, in the right facility, will receive care and support that are far *superior* to anything her daughter and granddaughter can offer. Specialised attention... well, quite. While it's true that familiarity, of faces and environment, is important in dementia, the fact is your grandmother is not doing well at your home. The specialised attention she needs now is of the professional sort, from people who have the training and experience to provide it.
Quality of care can be a bit of a lottery, but in the right place your grandmother will thrive. Have you seen any facilities you like the look of?
It's going to be easier for GMA to adjust if she's moved to memory care now and not in the later stages.
"She was discharged from the hospital unable to walk"????
Was she sent to rehab? Or was that an opportunity that was turned down by grandma?
If grandma is delusional she's going to need stronger meds than Ativan. She may need an antipsychotic, which is going to scare the heck out of you all but it works for a lot of people.
No one suggested an in house psychiatric workup during that last hospital episode? Did she have a UTI?
If she's over the income limit for Medicaid, you have a lawyer do a Miller Trust to deal with the overage. What are the plans for the house in Va?
I've really felt as though the doctors are too dismissive with my grandma. Any tips?They have only given us dead ends for geriatric psychiatry and the one hospital stay we got was after an ER visit where the doctor simply felt sorry for us and wanted to give us a break (he made sure we understood is was just observation because he had no real reason to admit her, regardless of her going up and down the hallway screaming at everyone about how her family is a drug house and she wasn't involved and she just wants to go home) Right now she takes ativan as needed, which is sort of working as long as we can anticipate behaviors, but I wish she had a regular medication that could keep her calm without her seeming so drugged.
I think my mom feels the way she does because before my aunt died from cancer last week, my aunt told my mom if she hadn't gotten sick then she would never have thought to move my grandma to a home. Plus, the one hospital stay (around November) resulted in over-medication and my grandma being discharged unable to walk. We had looked at homes back then everything we saw didn't look like a good fit for my grandma.
I don't nderstand how caregiving at home would work? Does your mother expect to bring in two shifts of caregivers and then do the night shift herself? That might work short term if grandma's sleep issues are under control with medication. But that doesn't sound like it's the case. If medications are giving her side effects, then she needs different medication. Are these being managed by a geriatric psychiatrist? If not, they should be.
Has any thought been given to an inpatient evaluation for her behavioral and psychiatric issues? Sometimes these medication adjustments are better done inpatient.
I have no idea why people think that elders will decline when they get professional care. It certainly depends upon the facility, but in the 5 years that my mom was in IL and then a NH, the only decline we saw was attributable to the progress of her dementia, not from being in a professionally run caregiving environment. They were much quicker to notice small changes that signalled that she was developing pneumonia, for example.
Option 2 sounds best to me. Especially since your mom is going to be doing this on her own. You need to get launched into your career, right? Don't get sidetracked into unpaid caregiving for 10 years. That's just not a sensible thing to do. Unless you are already a CNA and this would be a compensated, 8 he day, 5 shift a week gig with vacations, etc.