I am her sister and we were close to each other as we grew up together and still live close to each other. I moved near her to be close to family.
She is resistant to any change and denies any loss of memory. She is a proud woman and works very hard at not making any mistakes. Her house is neat and tidy and I see no loss in that regard.
Mostly her loss is in memory about where she has been or what she needs to do next. She has tried to be aware of this memory loss by writing everything down to reference to. But, when something comes up that she needs to do outside her routine it makes her angry and she refuses to ask for help or recognize she needs help. She still drives and is not keeping a record of when the car needs repairs because she can't hear when something sounds off or different. She still grocery shops for herself and only drives to places she has been driving to for years. She has lived in the same neighborhood for many years, so she knows certain routes to get herself to where she needs to go. She has asked me to take her to the doctor appointment that is out of her "memory" zone.
How do I start a conversation about this memory loss? Her daughter is reluctant to do anything at this time as she is swamped at work and cannot focus on her mother. This information was "dumped" on me this past weekend. Thanks, JMG
First step. Legal things need to be done NOW as soon Sister can't do them. There needs to be a will and a POA and you can take Sis to attorney, explaining that she understands but is beginning to have short term memory losses. Tell Sister that you are seeing some memory concerns and that she needs to get in place things that will allow you to provide care if every needed in future. Hopefully she will do this but whether she has, will or will not it is on to step 2.
Diagnosis. YOU and DAUGHTER (and yeah she has to take time to do it PERIOD) sit down with sister and with a LIST you will start to keep now of concerns. You can lighten this all up with whip cream and toppings of "Look, this will likely not progress and it is the inevitability for us all if we live long, but we need to do a check in/check up with your MD so we are prepared if you ever need us to help, blah blah".
If that doesn't work then it doesn't work.
But eventually there will be some push coming to shove and you will need a hospitalization and diagnosis, and then it will be a matter of your choices and her daughters.
It isn't OK to leave this on you and you are going to need to shake the niece up good. Tell her she is next of kin and that if she doesn't want to address it now her Mom may be in danger or will have to address it later when things will be much more difficult for her to negotiate.
I sure wish you luck. Your Sis is having all the signs that aren't good, and especially the anger and denial. That's all a part of it. Keep a diary of things now. Daily.
I am so sorry. Do know, not everything can be all fixed up neat and tidy and tied up with a bow in all this. You will see that daily if you follow the Forum. I sure wish you luck and I sure hope you'll update us.
the saga continues
I would first have a full lab done on sister. She may need B12 which effects memory. Low potassium can cause problems as can Thyroid that is not working correctly. There may be something the Doctor can give her for cognitively. MRI can see if any Dementia is involved. Better she does something now because there are meds that can help in early stages. Not so much when the desease progresses.
She is only hurting herself by not being proactive.
What type of Dr is this that’s she’s going to? Can you accompany her in to speak with the Dr?
before you get very far, you’ll find either you or her daughter will need power of attorney (both durable and medical) to be able to get much from a Dr.
Maybe you can have her accompany you to one of your Dr appts…just so it’s seems that you are helping each other, rather than it be one sided. She sounds like she’s holding her own for now. If she gets a dementia diagnosis, it’s only a matter of time before she cannot hold her own.
You can help, however most of this will be up to her daughter. There are many legal ramifications to getting power of attorney over someone. Just get to a Dr first…one step at a time. You don’t want your sister to be fearful that her independence is being taken…assure her nothing is being taken…help is being given and you expect her to help you when you need it too. That may appease her enough to get a Drs diagnosis accomplished. She will need cognitive testing. Again, she knows something is wrong, or she wouldn’t have asked for your help.
Unquestionably worth the copay and time.
Get an appointment ASAP.
She isolated, despite our best efforts to keep her engaged with others. She only wanted me.
I noticed that she displayed intermittent hearing loss. She could hear and answer opinion questions, but she couldn’t hear questions requiring factual answers, such as her date of birth, address, etc. Took me a long time to spot the pattern. An ER crisis led to an assessment which confirmed her inability to recall even the town in which she’d lived for almost 20 years.
Now that her dementia is quite advanced, her hearing has improved.
I told him it was near impossible to communicate with him and it was untenable.
So I agreed to help him with what ever it takes to improve our ability to communicate. His hearing aids were broken. He has always been very rough with
delicate items. The hearing aid people have repaired one at a time and in a few days he should have improved hearing. Whether he will actually use them is a whole other kettle of fish. I have done my part.
At this juncture, there are two ways to communicate with him, yell all the time or call him. If his phone is turned off, I don't bother communicating at all, but do leave him a message for proof that an attempt was made.
My DH finally got H/As and refuses to wear them. Too much ambient noise and a learning curve of how to 'blank' that out made him quit trying.
He misses about 50% of what is said. I have accommodated him by making sure he can see my face and I talk VERY loudly. Others are not so accommodating. He misses a lot. And he does act like he is beginning to have dementia, when he's not--it's all due to the lack of hearing.
So far, the whole family just has adapted, but he misses nuances that come with speech & conversation.
I encourage him to make copious lists, and try to get him to remember to take them. He's very reliant on his phone to keep track--but he's basically a forgetful guy and leaves his phone, wallet, keys--wherever he goes.
I let him be and let the kids make the comments. 2 of our kiddoes are Drs and they find him incredibly frustrating--
The other day he said to me "I am starting to feel more forgetful". I agreed with him and we talked about it a little. I can only do so much, and then we've wandered into nagging land, and I don't want to do that!!
He's due for a yearly checkup. He tells his doc he controls his diabetes (he doesn't) and that he wears his hearing aids (he doesn't). She's not stupid and knows he's non-compliant.
Until he is really 'bad' I am leaving well enough alone. He's just retired and working PT, so he's definitely OK in that regard.
Have also had a casual chats with LOs, to introduce this 'taboo topic' really. While these are not formal wishes, it's a start. It has has illuminated what some people value & how they feel about independence, control, treatment at all costs vs comfort care aporoach. Personalities make a difference too, flexibility for change as needed vs rigidity & control.
If you wanted to start light, maybe just point out that her daughter & yourself are her 'team'. You may add more to the team as needed. But you will be there along side her 🤗
That is when I found out that hearing aids help, and they don't. I paid a lot of money to get the bluetooth type. When my cell phone rings, the speaker goes to the hearing aids. Fantastic because I am more prone to answering my cell phone wherever it is. However, once the person starts talking, it is very difficult to carry on a decent, spontaneous conversation.
Big issue with the hearing aids and hearing loss: I cannot always hear what the person is saying due to background noise overriding the speaker's voice, or the voice coming over as fuzzy. When I listen to videos on my computer, most times, I cannot completely understand what is being said. Road noise while in a car makes it very difficult to hear people. I ask people to repeat themselves, however, that gets tiring. Not to mention that the punchline of a joke loses its timing and I may not have heard the joke accurately in the first place. Impaired hearing is far worse experience than impaired eyesight. If I am in a quiet room, I can hear people well with my hearing aids. The trouble is that I am almost never in a quiet room. Guess where they calibrate your hearing aids....in a quiet room.
Another possibility: A buildup of wax in the ears could make it tough to hear. Since the buildup is gradual, the person with the buildup doesn't realize it is happening and thinks they are losing their hearing, especially if the wax buildup is only in 1 ear.
If your sister is already asking you to take her to doctor's appointments that are out of her "memory" zone, she is already aware that she is memory impaired. I think your role would be to help her "make up" for her memory loss. For instance, maybe she would let you borrow her car once a week or allow you to drive to her appointments in her car and you will have to be her ears for the car. As you are reading articles, you might share any new research or gadgets that can help in loss of memory or hearing. Could the memory loss be affecting her ability to write and spell? If that is the case, maybe she can dictate into her phone, then translate the dictation to paper later. Maybe Alexa (Google) can help her with her memory by having Alexa perform certain functions when given by voice.
Some of the voice recognition software has gotten pretty accurate and maybe she could install it on her computer to help her write things down. Microsoft Tasks (free) allows one to put task lists together on your phone and PC and syncs up all the lists. I'm sure there are other similar programs.
As to how to start a conversation about this? What others have used on me is the "indirect" approach....share news and articles about devices or research that might provide help for the issue.
For instance, I noticed that the latest Apple operating system will automatically translate voice mail to written text. The next time you see your sister, you could say "Hey, did you see this new feature on the Apple iphone for voice mails?" When she answers, then you say "it automatically is translating the voice to text so that it is easier for me to comprehend the voice mail. How cool is that?" or something along the lines of "I know that you can speak into your phone for a text message. Can you show me how to do that?"
So here is an idea. There is some research going on that links low thyroid to memory loss. Low thyroid is detectable through blood test, but it is not normally tested. See if you can find the research on the internet. When you find it, share it with your sister and discuss it. Don't pressure her into doing something about it. Just show it to her. She probably wants to cure the memory loss and hearing loss just as much as you would like her to acknowledge it.
Good luck and I wish the best to both of you.
Do know that often lack of hearing does manifest for the "watcher" as loss of mentation. It can be quite comical around here with a partner 82, myself at 80, with respectively little hearing and needing an aid for him and me with a right ear basically out. What we hear and what we THOUGHT we heard is too different things, and we can laugh about it later, but it isn't always funny,and can make it seem we forgot when actually we never did hear it.
If your Sister is adamant against any talking with MD do know that may mean you are on the right track, but there is little you can do but watch. I hope a POA is in already, for if dementia hits, you will not be able to do this together, and it is crucial. You are looking at more money and a good deal more trouble if you or daughter ever need to get conservatorship or guardianship.
Wishing you the best.
It is amazing what a slight hearing loss can do to a person physically and mentally.
She may be isolating BECAUSE she can not hear and gets confused with conversations. Living alone and being lonely go hand in hand with that.
**Sad story**
I was at a seminar and the person speaking was a Neuropsychologist and he told us about a patient that the family brought in to see him. They had obtained Guardianship because of memory loss and confusion. And they wanted a full exam done. After HOURS of testing the Dr. said that the man had a hearing loss that was correctable. The gentleman was NOT confused, did not have dementia he just could not hear, understand what was going on.
This is not to say your sister will have the same problem and that with a hearing test and correction of any deficits she has that everything will be fine but it does give her a fighting chance when tests are preformed that WILL impact any conclusions of her cognitive function.
As to the discussion..
It is a difficult one to have with someone but If you have noticed problems I am sure she has as well.
When you do have a sit down talk with her do it in this manner.
Quiet room.
Look directly at her.
Speak distinctly
Lower the pitch of your voice. (often it is higher range that is lost)
Do not talk with anything in your mouth.
If you have to, write down important points.
Wait a while for her to respond. (if there is dementia it can sometimes take 30 to 45 seconds for a person to process what was said and respond to it. {*in 45 seconds I am way past that part of the conversation so I can see how people get lost and confused*})
When you take her to the doctor make sure she includes you when she is filling out the HIPAA form so that the doctor can discuss things with you and you can later communicate with the doctors office.
The next time she asks you to accompany her to a medical appointment, go with a pre-written note that explains who you are and why worrying symptoms you are seeing, and request they do a memory/cognitive test. Discretely hand the staff the note to give to her doctor. You may want to ask to be included in the exam room. If so, sit behind her so that whatever questions the doctor asks, if she doesn't give an accurate answer, you can nod your head to confirm or disagree with what she responds. The doctor needs accuracy or they can't be much help. I did this with my MIL and it helped to help her with her memory issues and ensuing dementia.
At this same appointment ask for the Medical Representative form (a HIPAA privacy form) for your sister to put your name and sign it. This gives her doctor the legal ability to discuss her medical tests, outcomes, diagnosis, etc. without your sister having to be present at the discussion (so your sister cannot hide her results from you). This doesn't give you the authority to make medical decisions on her behalf, only to be privy to her private medical information. It's a blanket permission sheet that needs to re-signed every year and there needs to be one signed at every clinic she goes to.
The hearing issue probably can't be solved with hearing aids due to her memory loss. They are very expensive and she can very likely lose them or even forget to put them in. There are hearing amplifiers that may be helpful and are easier to adopt and are more cost effective. She won't need a hearing test to buy them, they are OTC.
As her twin you are in the best position to have "the talk" with her. She needs to be encouraged to get all her legal ducks in a row for her future care. Lead by example and have her go with you, as you create these documents. Do not be her PoA...she needs someone much younger than herself to carry on these responsibilities. Tell her that without naming a legal representative to manage her affairs and make decisions, the only other option is guardianship by someone she doesn't choose...usually the county. If this doesn't motivate her then I don't know what will. Then you are probably dealing with the onset of dementia, which people often mistakenly interpreet as "pride" or "stubbornness".