Hello everyone just to update my mom condition after two strokes is starting to decline her health further because a few months back in end of may she took a blood test and the health care provider said she might have a blood clot but needed to confirm that with a ultrasound! I tried to encourage her that things would be ok and I would take her to the place for the test. So she scheduled it and then puts it off over and over and tells me she has trust issues with her young doctor since her previous doctor she loved retired who didn’t really get to see her as much but recommended test and she never completed them! So now the clot is making things worse she can’t walk and has breathing problems and pain in her legs and feet. We had emts come to help many times cause of falls and we trying to get her up from bed. It’s only me and my dad who’s also had his share of heart attack and stroke. My own health with back problems which I want do rehab myself. I’ve started to talk to her doctor since she has short term memory loss and not able to remember what day it is and what time it is and plus vision loss as she saids things seem darker to her. I asked the doctor to see if she can get home health care to help us out because me and my dad both gotta help her with going to the bathroom in the portable toilet or i myself gotta guide her to a regular bathroom. When the paramedics came last time she puts on a good show and saids she is ok and refused to get medical treatment and will not go to er at the clinic or hospital care. But the other day she talked about going into a rehab center to get help for her muscle issues but refuses to see she has blood clot cause she can’t get her legs to move and feels them getting numb. So she hits and rubs them trying to get circulation going. I” am at the point where if the health home care does call that me and my dad will tell them that she needs this help even if she doesn’t agree to it. It’s only temporary fix with a lady touch to help her get to the bathroom and be able to help her wash and bath with help. But my question remains how do I bring up the subject of asking her to take a test for dementia she clearly thinks that she is ok or some moments she realizes she isn’t ok. It’s driving me crazy as a caregiver. Any tips or suggestions on how you folks brought up the subject. Also my dad is trying to see how to sign her up for Medicare and advise them of her short term memory problems so she can still get extra care. She is 66 and turned down the care last year as i stated in previous post! Money isn’t the problem I think she doesn’t think very rational she saids she wants to go to her next appointment but may blow it off! So any advice would be helpful and appreciated. The paramedic advised us to contact her health care provider to get further assistance and options for her since we can’t convince her to leave the house. She has a case manager with the health care provider but sadly she has to decide her fate somehow. I feel she is going in out of common sense and sometimes is up late nights and into the the morning which is burning me and dad out. One moment she is mad and upset with me cause I’m tired and cussed at me then she is nice again! So that’s my situation at the moment and thank you for all your advice!
You are 46 years old, unemployed, with back problems (and an ear problem was mentioned in one post). So you have no income coming in. Do you have health insurance?
You should be earning money and establishing your own financial future. It seems that you are sacrificing yourself now for your parents. What is the end game for you?
Mom needs an urgent ultrasound to look for a blood clot? But ahe won't go, is that right?
So she doesn’t seek medical help... May or may not have a blood clot, may or may not get a PE or Stroke. May or may not get ill, disabled or even die.
Does she understand this? Be able to weigh this up & decide for herself? Is she stating clearly she wants 'no more medical treatment'? Is happier for Mother Nature to take over?
If she does NOT understand, is NOT clear about 'no treatment' then who is the responsible person to decide instead. Dad? Or you? Who will take over?
If you & you decide FOR treatment, either bribe her to get to the appointment or call EMS again & inform them Mom has dementia (un dx as yet) but lacks capacity to understand such matters or decide for herself.
You won't be able to force her to get any medical care if she doesn't have a legal representative like a PoA or guardian. This should also happen before she gets a cognitive exam.
If you are willing to be her PoA (it will be easier/cheaper to get this done online through Legalzoom.com or Rocketlawyer.com), then you will need to tell her a "therapeutic fib" to get her in to see a doctor: "Mom, you'll get free healthcare with Medicare and once you sign up you will need to have an intake physical to get your benefits activated." Whatever doctor she picks, whatever fib she'll believe -- whatever it takes to get her in to be assessed for her clotting problem, and discretely given a cognitive/memory test, and also checked for other common problems like a UTI, thyroid function, vitamin deficiency, etc.
If your Mom does indeed have dementia or cognitive impairment from the stroke, she can no longer use logic and reason to convinced to do anything in her best interests. She also is less and less able to have empathy for other people's burdens in providing her care. From now on therapeutic fibs is how you will get her to do anything. It is moral and ethical since you are trying to get her the help she needs.
If you can help get these things in place you will have a much better chance of helping her.
I am pretty sure it was explained that Medicare is not an option, per se. If she does not sign up at 65, there are penalties. I guess she is not on SS because Medicare is automatic at 65 if u started receiving ur SS payments prior to 65.
Your mother needs both physical and mental diagnosis as to what is happening to her and so do you, and sadly she likely will require placement as she gets too difficult to deal with. Whether her strokes have caused her mental incapacity or whether she has dementia (or BOTH), SOMETHING is very wrong here both mentally and physically, and if this "new young doctor" is ignoring all of this with no diagnosis then you and Dad are going to have to go rouge to get one!
As soon as she is at hospital get social workers involved to tell them that you are getting no medical support, that your mother has no diagnosis of severe physical and mental changes and that must stop now. Tell them that they can either help you get the consults and diagnosis you need or they can deal with getting a state guardianship for a woman who has lost her mental capacity and is diagnosed with a probable and untreated "clot".
Sorry, but you are going to have to become the squeaky wheel from Hades to get this done.
We, my brother, sister, mom and I, discussed the value of having one of us participate in these visits and reached an agreement. She/We understood that 2 heads were better than 1 to try to recollect concerns and questions at these visits.
I've said it before and I will continue to say it, our parents and we their children at some point need to stop acting in parent/child dance. We need to assert our adult status and help them like us as adults who are their to protect and help them just like they did when we were children. Not that our parents are children. The relationship needs to be respectful as adult to adult.
Let's tackle the young doctor first. Would you make your mom go to a restaurant she didn't like? Of course not! So why are you forcing her to go to a doctor she doesn't like? Find a new doctor! Hopefully, that will be a big step forward toward resolving her health issues.
Getting mom to accept Home Healthcare is a bit trickier, but if you stand shoulder-to-shoulder with her, looking at the world from her perspective, you may see the answer unfold on its own.
The thing about home healthcare is nobody wants it. Nobody wants to feel like they are dependent on someone else, are losing their freedom, and can't take care of themselves anymore. Mom has to decide she needs someone on her own. There are many types of conversations you could have with her, but this one works very well most of the time:
Sit mom down and tell her "X" wants her to have a helper, and the helper will start in two weeks. "X" can be the insurance company, her doctor, the church, or whatever will give the conversation credibility. (If you feel you would be lying to your mom, ask "X" first, they will say yes.) Now, it's not you or Dad who is forcing her to get home healthcare; it's "X" giving her a helper. (See the difference?)
She's still going to be resistant, so don't worry about that. The next question is, "What kind of help would you like the helper to help with?" Whatever she says is PERFECT! Write it down exactly, don't be judgemental, don't argue, and don't say that's not the helper's job! Just listen! If she says things like take care of Dad, clean the garage, or re-roof the house, it's not a problem. If she says things like emptying the dishwasher, cleaning the kitchen, or helping in the shower, you are off to a fast start. Going back to cleaning the garage.... we will need to narrow that down a bit, so the next question is, "Mom, what could the helper do to make your life a little bit easier?"
Notice, we are having a slow and easy CON-VER-SATION! You may be leading the conversation, but Mom is in charge. On your part, all there is to do is to listen and ask the next question. If she's not in the mood to have the conversation today, no worries; you can come back to it tomorrow. NEVER ARGUE!
At some point, she may get worried, upset, or even curious about who the helper will be. Calmly reassure her that it's just a few hours and a few days as a trial (then we will report back to "X" and reevaluate).
Pro Tip: People our parent's age (especially if they come from affluence) are used to having "people" in the house. It's rarely an issue of having people; it's almost always an issue of trust or fear of losing their independence.
If you did a reasonably good job of having your Mom see the benefit of having a helper, now you have two weeks to find that "mythical" person. I know the naysayers will say it's impossible, but I promise there are good agencies out there and great caregivers! You need to know how to screen them.
You know all the questions to ask. Assuming you will private pay, the first question to ask is if the agency takes Medicare or Medicaid. If they say yes, hang up! Next, read them the list you made with Mom (including cleaning the garage) and ask them if they have caregivers who will be okay with that work. Finally, you want to find out if they will send the same caregiver or a different one every shift. If mom only wants an "X," and they say they might send an "X, Y, or Z" they are not the right agency for you. (In my company, our view is the client is inviting a guest into their home. They get "X") Ask if you can interview the candidate and find out what happens if Mom isn't happy.
Pro Tip: Never hire private aides. They don't come with a guarantee.
I am out of space... I hope that helps. ~BRAD
Set up Zoom meetings if at all possible.
of the question and may still be an issue. So I’ll keep ya posted and thanks for your questions!
I realize that you are asking how how you proceed / get your mom to an MD when she doesn't want to go. My experience suggests that NO ONE wants or is eager to get a dementia diagnosis ... to hear that they do not have control over the life any longer nor can make decisions about what they do in their life.
People make decisions based on (one or more)
* feeling overwhelmed, depressed, suicidal 'tired of living"
- She may need medication adjustment
* Not caring about their self anymore (above)
* Brain chemistry changes (dementia) and they cannot make decisions any longer.
* Yes, she will be mad, cuss at you, complain - she is SCARED and FEARFUL of the unknowns - which are here now.
How do you handle these emotional outbursts? You first educate yourself in dementia and behavior - and then you feel compassion for the person knowing they cannot help how they are. This awareness will 'ease' your emotional reaction although likely not completely. It is not easy to navigate.
* You do not argue (ever).
- You listen, you offer reflective listening ("I hear you saying xxx")
- You do not try to convince as this is a losing battle.
* You leave - for a minute to an hour to a 1/2 day or a few days.
- You get caregivers in to give yourself a respite.
* You might / need to see an attorney / someone who sets up legal documentation to ensure you are the decision maker (for her).
- You need legal advice.
* Rather than knock your head against a wall over and over again, you learn to realize that you can do 'just so much' and then the chips fall where they may - or in another way, how she decides is left in God's hands - not yours.
* You take care of yourself - you can easily - if not already - can fall apart and let yourself suffer. You need to take care of your emotional health / well being (exercise, get out and walk, go to the park - something). Move ... yoga, jogging, dancing. Meditate ... eat right.
If you do not take care of yourself, you will not be able to support the best care for your mother.
Find / develop your support systems / neetworks. i.e., Next Door, church, meet-ups, therapist, group support through dementia association.
Study up on dementia with TEEPA SNOW. She is one of the country's leading experts on dementia and how to interact / work with the changing brain. When you understand your mom cannot help how she is due to her brain changing, you will shift into an OBSERVER mode vs a daughter trying / wanting to have a conversation with her mother about the best way to proceed.
As an OBSERVER, you can make clear(er) decisions on what YOU do -
(as outlined above).
This is not easy to do. We care about our loved ones. We want to do the best for them and we want them to do the best for themselves.
P.S. When my companion-friend of 20+ years likely had a stroke, he didn't want the paramedics to take him to the hospital. They asked me if I was his POA. As I was, they said to him "She made this decision so we need to take you to get checked out." He had a stroke. He soon after went into a nursing home. He did not return home (he was in two nursing homes over the last two years of his life). So... having this 'legal authority' matters.
Gena / Touch Matters
The change in sleep pattern is common w/dementia. When she get wound up late in the evening, it's called sundowning. Very common. Dr may be able to add an anxiety or sleep med to help her, and you, get some rest.
At 66, why isn't she already on Medicare? Did you mean to say you're trying to get her on Medicaid? Medicaid has really low income limits so that my determine if she's eligible or not. You can look limits up online for your state. In-home care will be limited, so be prepared that it might be time to hire your own in-home help.
I wouldn’t be offended if either of my daughters said this to me. It's not a loaded question!
I tried reading through all the posts and responses below and just found a description of her symptoms but not the word "diabetic".
At 66, the type of dementia she would most likely have is ALZ (like my cousin started to show clear signs of by age 68). But this doesn't account for her other medical problems. Diabeties can create dementia-like symptoms. Is your Mom also obese?
With all the info and responses provided, do you now have a different question for us about your Mom's care, other than focusing on a dementia test?
Mom may wonder why he is asking her such "unimportant" questions as What is the day and date today? Often the Doctor will give her five words and tell her he will ask her about them later. It is done matter-of-factly, but is actually rudimentary testing for ALZ. If she is hospitalized for the blood clot or its effects, he or the nursing staff may notice signs of dementia. She is certainly due for exhaustive medical exam since her mental symptoms may be due physical illness.
Up to you really what you will put up with. Once you take a senior into your own home this is often where it ends up. Not sure what else I can tell you but that you are going to have to be honest and insistent with her.
To add on, be honest with Mom, but ALSO the OP & her Dad be honest with themselves, with how much they can do.
The feeling to wrap someone up & bring them home because they ask to come home is strong.
Love is not enough.
Wants to go home, right?
"She had refused to talk to anyone at the hospital but yet wants to go home"
Mom is not understanding her situation. No blame. The mix of current uti & blood clot, previous strokes & diabetes.
Confusion would be expected. (Or 'lack of insight').
Whether dementia is also present is unclear at this stage. (Note: stroke survivors have a high risk of Vascular Dementia).
Your Father will need make decisions for her at this stage.
Have you & Dad discussed her recovery with her Doctor?
Have you & Dad discussed where to after hospital with the hospital Social Worker?
I would be waiting out this 'acute' illness stage. Then push for rehab for Mom to regain her strength. After that, home if she has regained enough strength & health - or if not, an alternative like skilled nursing care.
Give Mom the best chance to get back home. But be realistic.