Wife Slow to Move her Mom
My FIL passed away at the beginning of January. He was the sole caretaker for my MIL. They live in a very rural area. He never had her officially diagnosed. Now my wife and I are living with my MIL who according to her PCP has moderate to advanced dementia. As you all know, some days are just infuriating. She will obsess over the calendar and events, walking around with the calendar for hours going over the same thing over and over. We can't keep her from writing things down. If we take away the calendar she writes notes everywhere and just gets even more confused. In the evenings she sundowns and can become very childish, stubborn, and combative.
I have been able to go back to our home for short stints. Neither my wife nor I plan on doing full-time care of her mom. We are freelancers and have just not taken any gigs for this period of time.
I am just frustrated with the glacial pace at which my wife is moving to get her mom into a facility. She feels the need to have her mom officially diagnosed at a memory clinic two hours away. The PCP put a referral in two weeks ago, but we haven't heard anything from the clinic yet.
A few questions for all of you.
Am I being unreasonable expecting her to get her mom moved within 4 months of her dad's death?
Do you see any reason that an official diagnosis would be required?
Can the mom's PCP prescribe some drugs that would help with the obsessiveness and the anxiety? Is that common?
My wife wants to keep her mom fairly local to where she currently lives. It is 4 1/2 hours from our home in NYC. Wouldn't it be better to have her mom closer to us? I worry for our marriage as a result of the differences and for me feeling the need to escape this maddening environment.
My own mom has Alzheimers, but she and my dad have made plans for her care and are moving to a continuing care facility. My FIL was in denial, and it killed him, literally (he had a heart attack because he insisted on going home to take care of MIL when a doctor wanted him to stay in the hospital).
My mom takes Leqembi and it seems to be helping keep her fairly level. It is too late for my MIL to benefit from it - she is too advanced.
Comments
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welcome. Sorry about the loss of your FiL and your MIL’s cognitive decline. It’s difficult to place a LO into MC and your wife may also be in denial. A facility would do the assessment so I don’t think a definitive diagnosis is required. Being a remote caregiver is very difficult if not impossible. I agree she should be closer to where you live. Your wife should visit often as her Mom declines. Talk to your MIL doctor about medication for anxiety and agitation. Please come back and keep us posted.
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@TwoInHand, I am saddened at hearing of your difficulties. You are in a rough spot.
As you asked the question, I will answer. Putting a time limit on when your wife institutionalizes her mother seems harsh & uncaring. She is actively grieving the loss of her dad while experiencing anticipatory grief from losing her mom as well.
Please extend Grace to her and be her reliable confidant & friend. She needs you more now, than ever before.💙🫂🩵
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I hear your frustration and angst at having this situation thrust upon you. Believe me, even those of us who love our spouses sometimes feel the same. First, the calendar bit which seems to annoy the heck out of you…if that is the least of what she does consider yourself fortunate and keep her supplied with them. As to the anxiety and agitation, her primary doc. can prescribe meds that may help with that. As to the 4 month window…good luck in finding a place and placing her in MCI within that narrow window. Often times those places have waiting lists. Your wife is mistaken about her thinking to place her in the area where she now lives. Once she is placed the location will not matter to your MIL, and if she is near where you live, your wife can visit her more often. Whatever kind of dementia your MIL has is going to require patience on your part as well as your wife.
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Welcome. I agree that moving your mil closer to you and your wife makes the most sense. Living 4 1/2 hours from a lo in a facility is not practical in my opinion. She loves her mom, could you point out that being closer to you would allow her to visit more often? Unfortunately your wife might have to figure this out for herself. Maybe pick your battles and just be happy she is planning on a facility. Does she have a DPOA. This is very important and without it she may be required to go to court for guardianship (costly and time consuming). I don’t know why there would need to be a diagnosis before she is moved. As SDianeL said most facilities will do some kind of in person evaluation to make sure they are able to meet her needs. What is actually causing her symptoms is not going to be their priority. Im not sure what the clinic offers, but she will probably need to see a neurologist. It took us 3 months to get mom into the neurologist. If they don’t give a diagnosis on the spot diagnosis there may be follow up appointments to go over results and other tests. You should keep in mind that some facilities can have a waiting list (possibly months). Maybe you could make a few calls to look into this. If she hears about a long waiting list she might be willing to get her on one. Between the time it take to get her diagnosed and then the wait time to get her into a facility this could easily get out of hand. You are in a difficult situation. My mil was allowed to drive long past the time that it was safe, but being the in-law I couldn’t do much (there were also several other sibling’s involved). Could you encourage her to join this site. I would suggest a local class about dementia, but I don’t think it’s going to cover what she needs to hear. Sorry I couldn’t be more helpful.
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Thank you. I agree. I see this going on and on, especially if she feels the need to get a diagnosis. I suspect that like you, we will be waiting a long time to see the geriatric psychiatrist, and I hadn't even considered the possibility of multiple visits and follow-ups.
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Thank you, Maru, et al. Yeah, there so many other behaviours, but the need to try to stay on top of things by checking and rechecking the calendar every 3 minutes is the most distressing. We actually went over what's happening tomorrow for 2 straight hours today just to break for dinner and have her bring it up again. I realize that there are long waiting lists for places, which is another reason I am annoyed by the pace of forward movement on my wife's behalf. Others have expressed I should be patient. And honestly, I am being very patient, and realize she is mourning both her father and her now her disappearing mother. I truly want for her to be able to have better experiences with her mom during this time rather than get annoyed with her mom every day and to the point of extreme frustration. I mean, taking care of her mom literally killed her dad. I don't want it to do the same with her.
We had a long walk today while we were able to talk about what we are each thinking (instead of having to speak in hushed tones in found moments). She insists that keeping her mom local here is important because her mom is comfortable with her doctors. But her mom is not seeing any particular specialists besides someone who treats her osteporosis. One thing my wife is afraid of is that only people here "know my mom" - that if something comes up, people will reach out to my wife to let her know, whereas she doesn't trust that would happen at another facility closer to home. I expressed everything I have here about the benefits of having her closer and that we can find a place that other people we know have had family at.
More background on my wife. Like her father, she can be very stubborn and refuse to hear reason when it comes from another loved one.
If I could find a professional who can guide her, I think she'd be more willing to listen to that. A friend mentioned that they had a friend who was working with a consultant for their mom. I think my wife would listen to a consultant, ie, if she could research and verify their credentials (🙄).
I have also told her that I can't stay here much longer. I have my own parents who are on a waitlist at a continuing care facility and need to be spending time with them and a life of my own to get on with, including getting back to freelance work.0 -
I do agree. I am not putting a time limit on it. But I am looking for forward momentum and would like people's input here to see how I can assist her best in that direction. I am showing up every day and providing assistance (cooking, doing laundry, fixing things, dealing with finances), providing her respite, and loving her with grace.
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PS - we did get a POA for my wife and me as the secondary (I am now the next of kin beyond my wife. It's so sad).
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@TwoInHand
I am so sorry you are dealing with this situation.
Your MIL doesn't really "need" a diagnosis for you to place her in a MCF unless the POA is springing and requires a physician's signature to be activated. The facility's DON will likely do an assessment ahead of placement.
When my mom was ignoring my suggestions regarding dad, I found getting her into an IRL support group really useful. When they made all the exact same recommendations I did, she somehow embraced them. Maybe that would help your DW.
IME, long distance caregiving isn't effective. Staying local to maintain the same doctors is silly. FWIW, my own mom is on her 3rd cardiologist, 2nd retinal specialist, 2nd pulmonologist in 5 years because they've moved, retired or died. DH is on his 3rd PCP in 5 years for the same kind of reasons.
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If she goes to a facility, she will be seen by their doctors, so having doctors she knows is irrelevant.
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Most facilities have visiting doctors that come in house, because taking a person out for appointments becomes more and more difficult. At the two facilities we used the doctor or PA came once a week and saw whoever the nurse said needed to be seen. If I wanted to speak to them I could just be there on the right day, and they were also keenly in tune with how to care for this population because it was all they did. Once the person settles in to memory care it often doesn't matter where it is - could be thousands of miles from their home, makes no difference. The whole point is routine, controlled environment and support from staff which can be anywhere. The locals who know your mom will not be a stand in for the POA, and most friends fall away and quit visiting. People are uncomfortable with the disease, especially peers who fear the same fate. Visits with the PWD become circular conversations and boring and sometimes even a bit gross and people who aren't family usually lose interest, even if they are well intentioned. If possible, remind your wife of what is to come. Most of us have to advocate for our LO a great deal even when they are in a facility. They receive the best care when family is around often, checking in with staff, noticing if something is slipping through the cracks, and staff step up their game when they know the family will be around to see what's going on. That would be hard to do often if you are a few hours away. Also there comes a time where you need to be ready to meet your loved one at the emergency room. For my mother with Alz this was a common occurrence in the later stages. When they aren't ready for hospice the facility has to call the ambulance for legal reasons. Falls becomes a common occurance due to the changes in the brain and they have to send the person in for evaluation. My mother also developed seizures as a result of the Alz and had to be sent to the ER after those until we got the under control with meds. I must have met the ambulance 6 or 8 times when she was stage 6. Often woken from a deep sleep at night by a call saying she was in an ambulance on her way to the hospital and I would need to hustle over. I was about 40 minutes away at the time, and even that felt too long when I knew she was in an ER bed - afraid, unable to tell them any basic details about herself or medical history etc. I then moved her to a new facility closer to me, where I was 10 minutes away. I am glad I made that move, as I got to spend much more time with her in her final months than I would have if she was in the original facility. When she was in her final days I spent most of the day there but was able to run home for food and showers which allowed me the energy to hang in there for the long haul. It would have been exhausting to be a few hours away, since that final phase can go on weeks. That was a sacred time made possible by close proximity. The distance may become a point of regret after mom passes if your wife feels she couldn't spend the time and attention she wished she had.
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You've gotten great answers to your questions, and I agree particularly that getting your wife to a support group may be very helpful, whether it's in person or online. Meanwhile, I'd like to suggest that you develop a fondness for a coffee shop or some other social outlet that can get you out of the house and away from the calendar for a few hours each day.
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Thank you so much Minnesota Chickadee. I feel what you went through deeply in what you wrote. I want to share what you said with my wife, but I fear she is so dead set in her thinking and will feel I am just gathering an anonymous army to bolster my argument.
I have given her the book "The Complete Family Guide to Dementia" and she has read it and found it helpful. But it hasn't swayed her thinking even though it says a 1/2 hour visit daily is better than long visits once weekly.0 -
I have looked on the AA website and haven't been able to find online support groups. I think one from our home in Brooklyn, NY would be helpful. If anyone can direct me to where I can find these, I would appreciate it.
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This going to sound cold but with dementia on both sides and being freelancers , can you afford the financial and physical stress of not being in your home and in your routines? You've got potential care need dollars to stockpile or plan for yourself.
Sounds like your MIL needs 24/7 oversight , the disease can go on for years …where will you be at the end of that?
The best thing to do to care for your MIL , and your folks, is to keep you and your wife healthy , having 4 1/2 hour drives when tired and stressed ……not good
You will have more choice of MC homes in your area. If your wife is worried how to break the move to a home to her Mom- she shouldn't - she can just say you're coming for a visit to our place - and then plan a lunch at the MC home you've selected - "something happens"- like a power outage etc ….but lucky- they have a room for her to stay while your house is "being fixed"….
Involving Mom in any of these decisions is beyond her and actually painful because it sets off anxiety the brain can't resolve.
Calm is the goal. And that may involve what we call "fiblets". We can honor our folks without honesty that causes pain.
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This lists quite a few but it seems many are virtual. I would either call your local chapter of the Alz Assoc, or make a separate thread on this forum with a title of looking for support groups in Brooklyn NY as the headline, it will get more attention from people who would know.
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You may have to do this in two phases- get your wife to place her mom in an MC closer to where her mom lives just to get her somewhere. Then once your wife starts doing the commute to visit and starts dealing with the realities of it, she will eventually agree to move her mom closer to your home.
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I think QBC makes an excellent point.
There are many reasons that people do things in steps. I have dealt with AL & MC for my dad in two states: one where he lived for decades and one where I live now. (Close by is WAY better for me and, at his current stage, for him too.) But for lots of reasons—different from your wife’s situation—I could not move him directly from his own home to a facility near me. Multiple moves were hard for sure, but the first move got him into a safe environment with someone else cooking meals and managing his meds, and the second move made it possible for me to keep my job and to start sleeping again. And to stay sane.
I wish you well. This whole thing is just really hard.
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You and your family are in a difficult situation. Your wife is grieving the loss of her father and her mother. The mother she knew and loved is gone now. As others have mentioned, it is impossible to care for your MIL out of state. It took us six months to get an appointment with a neurologist. The subsequent testing took months. If you can’t move your MIL now, you could lose the option later. As the disease progresses, she will not be able to walk, stand, sit up. To move her could involve a skilled nurse or caregiver. Get her into a memory care facility asap. As others stated, the wait list could be up to a year. Knowing this, I would place her on a list where she lives and in your home area. Make sure there is a refundable deposit. Her care will be beyond what you and your wife can manage. The stress and frustration you feel now will only get worse as the disease progresses. It breaks caregivers and their families. Your wife needs a therapist who has dealt with dementia. A therapist will help her through this grief process and will help her make the difficult decisions that must be made now. I highly suggest that you find ways to get time for yourself out of the house to decompress from this situation. You are between a rock and a hard place. I am sorry you are going through this with your family.
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I have the feeling this is the way it is going to go. Hopefully she will realize that before an emergency. And hopefully there will be a satisfactory place with a bed for her close to home then too. I am so tempted to find a place and get my MIL on a waitlist all on my own. But I don’t like subterfuge.
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Thank you, I forwarded the site to my wife. We'll see if she takes advantage of it. I particularly emphasized the availability of the consultation to her.
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I fear you are very right, @Victoriaredux. I keep telling myself I will go back to Brooklyn and start seeking gigs for my work. But I can't stand the idea of leaving my wife to have to deal with her mom all by herself. Yet, I do need to get back to work fairly soon before all of my clients disappear.
I take lithium orotate now to try to stave off what may be inevitable, and do all the other things they recommend. At age 60, I do want to make the most of what quality life I have left. Praying science comes up with an answer in the next ten years.2 -
@TwoInHand
I am so sorry you and your wife are going through this.
You said:I have the feeling this is the way it is going to go. Hopefully she will realize that before an emergency. And hopefully there will be a satisfactory place with a bed for her close to home then too. I am so tempted to find a place and get my MIL on a waitlist all on my own. But I don’t like subterfuge.
My situation was a bit different. The PWD was my dad and the official decision-maker was my mom. Mom fought me on having dad evaluated for a decade such was her denial and reluctance to make the changes which would derail her happy retirement and upset dad.
Faced with the potential of "inheriting" a cantankerous man with dementia, I created a robust Plan B. I located a memory practice for an evaluation and toured a dozen different MCFs near me as living with me would have been a non-starter. I even found a SNF that would be willing to accept him immediately should I need to place him on the fly while getting him into a MCF.
I never needed my Plan B, but having toured so many different facilities I was able to take mom to the 3 I thought would best suit dad when she was finally ready. This spared her touring some places that were especially depressing, those that cherry-picked residents and wouldn't have touched dad as well as some high-end places that were beyond her means.
HB
ETA: I'm in the Philly suburbs which are well-served medically. The major university memory centers here have waiting lists of 6- 12 months. The actual evaluation can take several testing appointments over a month or 2 with a follow-up to get the diagnosis 2-3 months later.2 -
The memory center where we have been referred is in Wilkes-Barre. So your info is particularly helpful. My FIL was also in denial for a long time and refused to have her evaluated. At first I think he didn't want anyone to know she had a problem, including her. Then it became so apparent it was an open secret. Everyone knew, but her.
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With the competition for a place in a good home tough, especially after folks see their parents for Mother/Father's Days [5/10 6/21] and go WHOA , if may behoove you to get on lists now for places you'd consider.
Easier to turn down a bed then try to find one.
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One suggestion that helped us with the calendar was to remove it entirely and get a blank white board (not the one resembling a calendar). Each day I write the events of the day and the time. I never inform about anything ahead of time because that creates an anxiety to remember which they can’t do. So there is just one day to look at and when he forgets he can look again. It has helped with the anxiety of needing to look at the calendar repeatedly and trying to remember dates/events. It is your mother in laws anxiety driving this behavior. Medication can also help.
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As a caregiver of 2 parents, I cannot fathom being that far away.. Please talk to her or have her talk to someone like me.. Being closer will give her more peace of mind knowing that she could get there quickly if need arises. As far as the calendar goes, I have found that my mother loves puzzle/game books. There are many on Amazon and she really enjoys trying to find the words in the word searches, mazes, find the difference pictures, and other word puzzles.. She stays entertained for long stretches.. I would definitely get one to try, at least. Medications can also help with all her symptoms. She needs to see a PCP or we see a neurologist to discuss those things and get scripts. I moved in with my parents Sept 1 and my husband is at our home with our 14yr old daughter.. It's been hard, but we are close and I cook suppers for everyone nearly every night so we are all together most days for at least an hour. Keep the faith and be there. My husband is my rock, (he worked with the military) and we laugh about now I am the one deployed not to a different country, but to a different world. Try to find the humor in it.. that's the only thing that makes some of it bearable.. Here's one - Just imagine taking both of your parents to the oncologist, one in a wheelchair and one with a walker for their appointments at the same time, and one of them has no concept of what is going on.. Yea! It was pretty comical. My life..
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I can see my mom getting obsessed with the calendar and this is a great option.. I will do this if she starts down that path!
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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