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Apologies if this has been addressed in earlier threads.
My MIL has been diagnosed with early-onset dementia. She is in her early 70s. She owns her own home in the Southeast US and we are in Oregon.
She is aware of her situation and not in denial about it. She is under a doctor's care and on medication. We are fortunate in that one of her friends in her community discreetly gives us regular updates on her condition. When the friend sees a change or something that is out of the ordinary for her (behavior-wise) he sends us an email.
Well, like so many other stories it seems that things are getting worse. Not radically worse, just incrementally. Needless to say, the distance separating us adds to the difficulty. We can't just pop in on her to see how she's doing.
So my question to all of you caregivers is this: What is the first step? The last thing I want is for things to go downhill rapidly and for my MIL, my wife, and me to be put in a position to have to make a snap decision. At the same time, she is enjoying her life; however, her local friend has let us know that she is cutting back on doing some of the things that she used to love to do (mostly social things).
I feel like we should take action very soon while she still has most of her faculties. Certainly she should be involved in any decisions that are made as long as she is capable. I'd like to see her move to Oregon and be closer to us (although she will absolutely hate the weather)--maybe at first to a nice senior apartment situation that has activities and services.
How do we approach her? Do we approach her? I know not all cases are the same, but if you had to do it all over again, would you do anything different in the early stages of your elderly relative's disease?
Alzheimer's is one of the sneakiest diseases I ever managed. The drugs keep the patient calm. If you are lucky she will not ever be violent. I did not realize my spouse was in trouble until I went shopping and the police came looking for me! I had to stop at one store 5 minutes from home. I called and said I would be home in five minutes. My spouse forgot and accused me of being gone for days. After that "Aunt Carol" came if I would be gone for more than an hour.
Hiding things and then accusing friends and family of stealing is common. You cannot stop it or slow it. All you can do is try to keep the patient calm and occupied. My spouse liked movies, sports and country shows. It was a blessing. Eventually they forget how to do common things like make coffee and drive. You eventually become a guard and are constantly aware of what MIL is doing by noises or no noise 24/7.
Every one has a different experience. If I were you I would have the cash tucked away in the house, the car full of gas, and in top running condition, at all time. You will go to Florida at the most inopportune moment. MIL must understand that you love her, but .... there is no other option.
You must understand when you reach that point, she may well not remember the conversation. It will probably be very, very upsetting. These patients are very fixated on staying where they live, with the things they own. They don't give in easily or adjust readily.
My spouse died within a year but it was due to lung diseases.
Probably most important is to realize your mate may resent not being given the opportunity to spend as much time as possible with mother. I've been on both sides of this fence. There are no winners only losers.
Since she is aware and not in denial, perhaps you and yur wife might visit her and all go to a a counselor together to discuss some plans. She may be relieved to know that you guys want her close. My mother was and remains in denial so it's huge that she isn't.
Yes they are very fixated on stay in place. They can only live IN THE PAST. Because they have difficulty making new memories. They want their OLD LIFE BACK.
YES you want to start this conversation sooner than later. A very serious side effect of this disease is the person doesn't drink enough water and they get dehydrated. Often they get a UTI (urinary tract infection). When that happens you think the person has REALLY LOST IT. They really go off the deep end, often. She could end up in the hospital if that happens and get injured on the way. And the journey to the hospital is usually not pretty. Delusional, thinking they see deceased people, anger, combative etc etc. THEN they start antibiotics, get hydrated and forget it happened.
I'm saying this because I am NOT really a professional caregiver but have become one - of a pet sitting client in assisted living with mid stage dementia who has her dog with her. So I've learned a ton.My client tripped and fell last year...on her face on concrete... and was seriously injured AND had a concussion. She spiraled IMMEDIATELY from very early stage to much worse. I understand this is not rare.
This week I visited several facilities for the out of state family because of a discussion that she may be better off in a different place.
EVERY one told me that:
1. You want to keep the person in Assisted Living (ALF) and only move to Memory Care (two different things) only when you HAVE TO and have run out of options with ALF.
2. They see people all the time that waited too long and had to react instead of plan. Like what happened with my client.
Assisted Living does NOT always mean strictly dementia patients. My next door neighbor without dementia moved to ALF after her husband died and she is living in a mix of people. SO somehow you have to broach the subject - I would suggest in person - it's a great idea to go to a counselor together. I'd position that there are several Assisted Living places where she can have a normal life with friends like in a normal "condo community" but some assistance with whatever she may need. If she has the resources some ALF properties also have independent living. Where she can live outside of the ALF building with home help coming in. But I can't see that working for all that long. But she'd have access to the ALF's facility, too. The dining, the pool or activities etc. I would expect her to NOT want anyone in the house. My client won't even tell her nurses her EYE itches in fear of having to "do something" like god forbid let a doctor look at it. OTOH, I see some residents who socialize even though they are memory impaired. But my client's family said she was always prone to being not all that social anyway.
The fact that she's withdrawing socially is a huge signal that you need to start now, IMO, before forced to - like you said.
They will HIDE IT as much as possible and try to avoid being embarrassed. My client FINALLY speaks of her "concussion memory loss" after a solid year of denial. So I think her family is quite lucky in that respect. Of course, some days she asks me "How is it I feel so sure that my parents are alive but they would be 107?"
It's a very COMPLEX brain thing. Like half twilight. She'll talk about her parents in present tense then realize it. Sometimes it feels like she's hinting that she is afraid to ask questions, even.
Everyone may be different but I found that ASKING QUESTIONS in a certain way works for my client. I don't mean testing her memory. I mean asking questions open ended that make her think about what she wants or if it's possible.
Like when she used to always talk about "leaving here" I'd simply say "Oh where are you headed"? If she said "my house" I'd say. "OH, I thought you told my you sold that?". Instead of telling her I knew she sold it. Then she'd work her way down the winding path that led to "nowhere to go back to". By that time she was tired out and ready to change the subject. Finally I have to say she has ACCEPTED that the ALF is where she has to be and is actually as happy there as anywhere. Because without her husband and memory she is nowhere anyway.
Of course, along the way over the months I had to say "OK you can move right over in those condos, and get out of here. BUT remember: no chef, no laundry, no cleaning, no medicine administration, no hairdresser on site. SO how 'bout you get crackin on doing these breakfast dishes here and see if you wanna do that FOREVER?" With a BIG SMILE. Then she'd say "No way!". LOL I also told her "Well you might have to prove to the doctor and your daughters that you CAN live independently after your concussion because they only want your safety."
LISTENING is really important though, and TIMING. And reading body language and moods. I never dismiss her statements. I saw her on the phone with her daughters early on and that was BAD. So I decided to validate her feelings, sometimes talk about my own mother, I even talk about her condition and get her point of view. Now the daughters don't feel obligated to HEAR HER admit certain things since they know she accepts her condition where before they were trying to read into it on the phone and it caused lots of fights.
I really think she is 100% better after being in the ALF she's in since January. It took until Sept.
And she's VERY insightful. She can tell in a quick minute if she's being humored or tricked LOL. And she herself is very good at both. But I find her hilarious and we spend alot of time laughing. I assume it's because we're not related and she learned to trust me after me going there 3x per day all year "for the dog".
Good luck. Do all the research you can so you're familiar with the symptoms, stages and clinical needs. For example it's REALLY important for a facility to have staff that really gets to know about her life to build a bond and use those OLD memories for lots of reasons including for her OT exercise motivation. When the time comes.
Lastly, my client cannot pass ANY of the memory tests she gets at the doctors BUT she knows and can explain every single test/question and the expected answer. It's pretty funny, actually - she gives ME the tests....and we just laugh about it.
You have to look for whatever you can find that's upbeat and it's hard when it's your own family.
Last edited by runswithscissors; 10-24-2013 at 10:59 PM..
At the other end of the spectrum of probable advice to hurry up and take her life away, we have a neighbor that is going into his 3rd year of living alone after diagnosis.
All of his mail goes to his daughter who handles all that involves(she lives two hours away) and she sets him up every few weeks with his meds into compartmented containers, and several other things are arranged that help.
His deterioration has been very slow and only occasionally noticeable
This condition progresses differently for different people so you may be best off to arrange a visit that includes an appointment with her doctor and a frank discussion about the realities but don't go off the deep end .The time will come for commitment, probably, but it could be a long time away. Her quality of life needs to be considered.
Is there more danger of something happening if she remains ? Sure but even if she moves near you, but not in with you, unless there is 24/7 supervision, the same things can happen
At the other end of the spectrum of probable advice to hurry up and take her life away, we have a neighbor that is going into his 3rd year of living alone after diagnosis.
All of his mail goes to his daughter who handles all that involves(she lives two hours away) and she sets him up every few weeks with his meds into compartmented containers, and several other things are arranged that help.
His deterioration has been very slow and only occasionally noticeable
This condition progresses differently for different people so you may be best off to arrange a visit that includes an appointment with her doctor and a frank discussion about the realities but don't go off the deep end .The time will come for commitment, probably, but it could be a long time away. Her quality of life needs to be considered.
Is there more danger of something happening if she remains ? Sure but even if she moves near you, but not in with you, unless there is 24/7 supervision, the same things can happen
My client has had problems even WITH "24/7 awake supervision". Non compliance and also just getting dehydrated then falling AGAIN and having to be 911'd. Luckily she had no bones break etc, she is TOUGH for 87!
I'm wondering if there is any documented difference between women and men. In my client's ALF the men are all quiet, no drama, and gentle. The women OTOH? A handful!
Maybe it's just this particular place and the fact that so many women outlive men. And the UTI component.
There are Independent Living communities here with a separate ALF that will service the Independent Living people if they sign up for that. Like, if they fall they can press the button and the ALF nurse will rush over in a golf cart. Or using the transportation they have in the community. So that's a form of 24/7 help available but not visible or used until requested by the resident. Which I don't imagine a dementia person asking for alot of help... much with dementia but I guess there are exceptions. I DO see some ladies who are more OCD than mine always bugging the nurses and chef etc in a friendly way or with urgency over imagined issues and that's a pretty good thing compared to the ISOLATIONISTS! I guess there are clearly some people who are more "suited" to a transition or ALF in general, than others. When my client goes OCD she goes internal about not asking for help and starts doing things on her own like trying to make phone calls over and over that don't work. Often refusing help. So I let her fail a few times and then offer. OTOH, when other ladies get OCD over something they reach out to the staff over and over right off the bat. I also notice THOSE ladies are very particular about everything. Makeup, clothing etc even though they need assistance and can't dress alone (pick out clothes). MY client will wear the same thing for 4 days and fight you tooth and nail about hygiene and changing clothing. Insisting she has it fully under control.
She also is awful about meds - excuses why she shouldn't take them, arbitrary, sometimes politely dismissive or argumentative. But I see the "other" ladies always rushing the nurses station for meds.
Such a learning curve, right? You get to learn about this shocking disease AND learn about your "new" loved one who is changing before your very eyes, over and over.
Last edited by runswithscissors; 10-25-2013 at 07:59 AM..
If you haven't already read it, please read Squirl's post on moving her mother from CA to TX. Good luck, and you will have a down hill battle before it is all over. Only you and your family knows your LO and what should/should not happen with/to them. If there are no close relatives in her area, then your best bet is to go ahead and move her closer to you - or you closer to her. Or you can always hire a Geriatric manager to oversee her care. Does she have a will? Who has POA, etc.? You may need to find an Elder Law Attorney to help you make all financial decisions.
My dad has early-onset dementia. He's in his early 60's. I think it's only been about three years that he's had a problem. At first, my mom was really enjoying it because she could tell him that he'd agreed to anything she wanted, or tell him that he liked foods he'd never liked. My sisters and I tried to get her to take away his car keys because we didn't think he was safe on the road, but she insisted that he was fine.
Then last year my dad got lost on the road a couple of times. One time, he ended up about 60 miles away but we had reported him missing, so an officer pulled him over and my mom was able to go pick him up. The other times, he spent the entire day lost but was able to get home by himself. At that point, my mom was still leaving him home alone all day while she went to work and she refused to take away his car.
Then he ended up in the hospital for low sodium...unlike most dementia patients who have a risk of becoming dehydrated, my dad will drink gallons of water every day unless someone is there to control it. I took care of him while my mother finished her semester, but he was really mean to me and my kids and there was no way I could watch him long-term. Even when he was in a good mood, he had no filter anymore and was keeping up a running commentary about his viagra and what he wanted to do to every woman and teenager he saw as we were driving down the road.
A couple of weeks after the hospital stay, he snuck out while my mom was distracted, and drove his car the wrong way down the highway. The police impounded his car and brought him home. After that, we convinced Mom that the police would report it to the insurance company and if she let Dad drive anymore and he wasn't lucky enough to be pulled over before he killed someone, she could be sued and lose her house and have to move in with one of us.
Now my dad becomes hysterical if he can't see Mom, even if she's in another room or the restroom. He also cries whenever he doesn't get what he wants. He sleeps many less hours than she likes to, but she has to get up because he tries to cook. A couple of weeks ago, she handed him his pill organizer with the compartment open for that evening's pills, and then she went to the restroom. When she got back, he had taken the entire week's pills and they had to go to the hospital.
Anyhow, I guess the point of this long post is that it's unpredictable and you don't know how many years your MIL will be able to make decisions on her own. She will try to hide the problems that she has or downplay them. If she's receptive to the idea now, it might be good for her to move into assisted living. It will be more difficult later on as she gets worse. Also, you may not know she's gotten to the point of being unable to drive safely until she gets lost or has another problem.
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