Overwhelmed
First timer here.
My MIL is the one who needs help. My DH and I live about a 5 minute drive from Mom’s. DH is eldest of 4 sons, with the other sons living hours away.
Last month was the neurologist appointment, attended by DH and youngest brother. MIL didn’t do well on the tests. Neurologist stated signs of Alzheimer’s but doesn’t want to diagnose without images of her brain. MRI ordered for end of January. MIL refused to go on the morning of MRI and sees neurologist as public enemy #1, as there’s nothing wrong with her head! We tried to get her GP in on the act to help us get her a CT scan, since she hates the neurologist. Epic fail, as he ASKED her, giving her an option, instead of directing her to get it done, knowing how much she will do anything he tells her. Now who’s the Dr?😏
In the last 3 years I’ve personally seen a decline in memory, repetitive questions in a short time period, misplacing keys, etc so I know this has been going on prior to my arriving on the scene. We’re planning to move out of State to be closer to grandchildren and she doesn’t want to move and we respect that. Our plan is to get some home help for her as she’s no longer able to live alone, she does currently but when we leave for good, she shouldn’t. My DH was so uncomfortable before we took a load out of State for our move a few weeks ago, that we were both relieved when his youngest brother came the next day and stayed with her until we returned. She’s unable to pay her own bills. My DH does that all for her. She’s unable to take her daily meds or even set them out herself, without us coming daily at breakfast, lunch and evening to ensure she eats as these pills can upset her stomach.
My question is, how do we care for our Mom when we haven’t officially received a diagnosis? She’s flat out refusing the scan and MRI.
We’re currently reading “The 36 Hour Day” and it’s making perfect sense in all she displays and we are learning how we can honor and love her day by day. I will not deny that the stress and strain is getting very difficult for me😞
Thanks for reading🌺
Comments
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Welcome to the forum and I'm sorry you are facing this. There are lots of moving parts as you are planning a move.
Making a formal diagnosis is probably the least of your worries. The available medications are not a great help and are not well tolerated. I can understand wanting to complete the process, but frankly, taking care of her on a day to day basis isn't going to improve by having a formal diagnosis.
Two very important principles are that you don't try to reason with someone who no longer has the ability to reason, and that safety has to drive the decision making. She doesn't sound capable of living alone, and you are probably going to have to make other arrangements without her consent. She has anosognosia, which is a feature of the disease that makes her incapable of appreciating her deficits. If your DH does not already hold power of attorney for her for finances and healthcare, you need to talk to a certified elder law attorney as soon as possible to get that taken care of. You can find them at nelf.org.
Unless you can afford 24/7 supervision for her at home, she will probably need to either move with you or go to memory care. I would start researching facilities near your new home, as trying to supervise care long distance is very difficult. If you are moving across state lines and need to consider qualifying her for Medicaid to cover care costs, you should investigate the Medicaid requirements in the new state. Honestly it sounds like the most feasible thing is to get her moved and then sell her home to cover the costs of her care.
No wonder you feel overwhelmed, this is a lot to absorb in a short period of time. Caregiving frequently falls to females in a family, so as the wife of the eldest son I'm not surprised it's falling to you. But this forum can help a lot, and there are many wise and supportive folks here who will help. You've come to a good place.
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Hi and welcome.
I am sorry for your reason to be here but pleased you found this place.
I have to agree with @M1 on this. The formal diagnosis is not critical unless you need it to activate a springing POA to act on her behalf. While a complete evaluation is best, at the end of the day unless the symptoms are caused by some sort of treatable condition with similar symptoms it doesn't really change anything. My dad had a comprehensive evaluation, my dear friend's mom was informally diagnosed and followed by her PCP; the approach didn't make any fundamental difference at the end of the day.
If you don't already have the legal paperwork in place to act of her behalf, that needs to be done asap. If she won't sign off or if the lawyer deems her incompetent to sign, you will have to obtain guardianship through the courts. This might force comprehensive testing for her protection (when my aunt obtained guardianship of her sister, the PWD had court ordered testing done).
You're going to need to lean into therapeutic narratives to keep her safe . Around here was call them fiblets. She likely has anosognosia, so reasoning isn't going to be effective here. Talk of moving will only upset a PWD, so it's best to protect them from the discussions and logistics and just move them.
I would not even attempt to assume the role of caregiver from a distance. There are people who do hire geriatric care managers to be their eyes and ears, but at the end of the day this gets prohibitively expensive for most mortals and comes with issues like aides who don't show. In your shoes, I would make a plan for moving her to wherever it is you wish to live. I'd bring her to wherever it is you're moving under the guise of seeing your new place and just don't bring her back. You could have her stay with you for a week while a senior moving company packs and delivers her stuff to a AL/MCF and sets up her place. Then take her there as a senior hotel while she's visiting. Have one of your BIL's manage the sale of the house after she's left.
HB
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Whew that's a lot. I agree with everything that's been said above. I had to move my mom out of state two years ago. She was NOT happy, but she was definitely not safe alone. There is no way to supervise the day to day needs over a long distance, and those needs will only increase as time goes on.
Having my mom in memory care has given me such peace of mind. No, it isn't perfect. And yes, I'm still very involved in the details of her care ... but I can do that from 5 miles away much better than I could from 400 miles away. And I know she has 24/7 supervision and help from people who know dementia. Huge relief!
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M1 thank you so much for the warm welcome and your thorough reply. I truly appreciate!
I am relieved and settled knowing that a diagnosis is the least of our worries. Thanks so much for sharing about anosognosia! This makes perfect sense!
In all of this I forgot to mention that my DH does have POA over her medical and financial needs, along with her youngest son.
I truly appreciate your input and look forward to reading around the forums.
Thank you🌺
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Thanks for your reply psg712. Mom absolutely refuses to move from her house that she’s lived in since 1963. I’m sure her response will be like your Mother’s when her youngest son moves her in with him eventually.
I think since her youngest son is her natural son and my DH is her stepson the decision to move her will be on his shoulders than ours. He lives 5+ hours away so we deal with this daily. When he came last month he saw how much we have to care for her and was shocked. We had hoped that she would want to move with us so she could be near her great grandchildren but no. All of her close friends have moved out of the city we live in and she constantly states they moved away from her and why did they. She seems bitter about it and we have offered to take her to visit her friends and such and she refuses.
I appreciate your input🌺
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Since your husband has POA, even though the stepson, I believe it’s legally up to him when and where she moves. If your husband is willing to work very closely with his step brother about her care, then turning over the day to day to him may work. My bro and I managed my moms care long distance. My brother was primary POA and I secondary although we worked together as equal partners. He started all the financial fixes for problems she got into and getting part time care in for mom before I chimed in. She, too, was mostly alone in her city. We were able to start help coming in part time, then full time, then 24/7. IME, long distance caregiving is very difficult to sustain. We either had to move her to a facility there, which didn’t make much sense as she wouldn’t have many visitors except when my bro or I traveled there, or move her to one of our states. We moved her near me and I finally shared equally with my brother and was her 24/7 caregiver.
Long story short, I think you should move your mom with you. It will be difficult for your husband to manage her health care long distance. I imagine if you leave her there another move or two will be necessary down the road. Every situation is different though, I wish you all good luck.
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I'm of the mind that the POA for medical issues needs to be close enough to arrive at the ER when her ambulance does. Even if you were to move her to an AL or MCF, they will send her to the ER alone if she has a fall or medical need.
HB
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Thanks so much for your reply harshedbuzz! Thanks also for the warm welcome!
We have no intention to care for Mom long distance. We know when we move that is when her youngest son will potentially move her with him or come and stay with her before finalizing what to do. My DH and I know she is not going anywhere with us and the way his brother speaks he is going to move her.
Thankfully my DH and his brother have POA over her medical and financial needs.
Hello and thanks mommyandme for your reply. Both my DH and brother have POA he is the primary I believe. Thanks for sharing your experience with long distance care that thankfully changed so y’all were close to your Mother. I’d love to have Mom close but she doesn’t want to move. This forum has made it clear to me how I can hopefully let my BIL know how he can move her when the time comes.
Thanks for this! Makes complete sense!
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@Bebobra said:
"This forum has made it clear to me how I can hopefully let my BIL know how he can move her when the time comes."
It sounds like that time is here. Your DH's gut is probably spot-on.
Your DH (and you) are providing a great deal of scaffolding to keep her on track. If you're going to her home 3 x a day to be sure she's taking her medication and eating, it suggests she's probably too impaired for a hospitality-model AL and would be better suited to a MCF or moving in with BIL if that's his choice. Unfortunately, a PWD doesn't have the reasoning skills to be a part of the discussion. If she needs to be moved to be safe, then those who are responsible for her wellbeing make it so by whatever means necessary. Perhaps a fiblet about a sewer main repair making it necessary for her to move temporarily.
How did it go when your BIL stayed with her? Sometimes PWD can showtime (seem more capable than they typically are) for short periods or are much more symptomatic in the evenings and overnights.
HB
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HB thank you!
I’m TOTALLY with you. It has only been since her car wreck last November that things started moving more with the brothers. I personally can see more and more of her needs not being met with just us. For now I am hoping we can get her some home health until we move and when his brother will take over caring for her more. At this time I’m not sure if that means moving her to where he is or staying more and being active with her in her city. His work permits him to work on the Moon if need be so that isn’t the issue. I’m just not sure how it will all pan out and frankly I’m just praying all will go well when we bring in the home help.
When the BIL was here he saw how much she has declined. He had no clue. The worst part of his earlier visit when they both took her to the first appointment with the neurologist he was heartbroken as he witnessed her fail the test the nurse carried out with her. So when he stated he saw more of that and she even displayed her anger and shouting about the neurologist in regards to her needing a MRI. He was shocked! We see it all the time when something triggers her when my DH suggests something. Upon reading the book I get the “catastrophic event” they label and usually stop seeing how upset she becomes however my DH didn’t see that and would be arguing with her. She showtimes everyone including us and I know her and recognize it clearly. I think the reason his brother didn’t see any of this when she would go for periods to stay with him is due to them being a very busy family. The wife works from home and is in that, their daughter is at school and has extracurricular activities that keeps her busy during the week and he has his business and is locked into that so Mom doesn’t like going there for weeks on end as she is bored. She stays home and watches their tv if she can turn it on. Apologies now I’m going on and on. It is quite the journey I have never been on yet heard about from friends.
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Sounds like your family, too, are becoming dementia warriors and it helps to have a team. Your MIL is fortunate to have all of you advocating for her. Yet, I’m so sorry this is your current and future reality. Let us know how things are going. Thanks for sharing!
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It sounds like BIL and his family have a lot of activity going on already. Will they be able to supervise her 24/7 while working and taking kids to their events? It's one thing to be able to work from home on occasion; it's a completely different thing to HAVE to be there all day and to be vigilant to prevent mom from leaving the stove on, taking the wrong meds, walking out and getting lost ... while meeting the demands of your job.
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Thank you.
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Hello psg712 thanks for your reply. They have one child, a teenage daughter that is tied up with many school and extracurricular activities and they are the most busiest family I’ve ever met. No they will not be able to supervise and do not when she is there and have been at times clueless as to whether she has taken her meds at all and if even on time and perhaps eat a meal with her once a day when she’s there with them as no one does what we do here with her as they are SO busy. It’s interesting to me now you mentioned about her wandering off. Every time she goes and stays with them for a few weeks to a couple of months she goes nowhere. She never leaves the house without them. It is unfamiliar to her so I guess she is afraid she’d get lost perhaps 🤔 They go to school and work and she stays put in the house and only goes with family when they are visiting family, shopping and such. She doesn’t even go to the beauty parlor there. When she’s here at home every Friday without fail she’s at the beauty parlor getting a wash and set.
Good update today is that my DH called a home help company that we will be meeting with in person on Monday. BIL will join the meeting via FaceTime. DH looked into a couple of companies for a medical bracelet for Mom. DH also informed BIL that the time has come when he may have to come for Mom and never bring her back home again. I’m having mixed emotions yet know this will be good for us, Mom and the entire family. BIL has already looked into MC and there is one that is pricey near where they live, DH knows she can afford it. Once they sell her house I’m sure that on top of what she has will pay for her care for about 2 - 3 years.
I appreciate your response and questions.
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Latest update since a couple of weeks ago.
I’m at a loss today as everything we have tried has been rejected by my MIL. Medical alert worn for 2 days then decides “no need”; Palliative nurse check for perhaps twice a week rejected “I don’t need help!” Home health not even arranged even after we as a family met with the company to share our needs for Mom. DH has signed paperwork to palliative nurse and will get her Mom’s SSN so she can get all her medical docs from both her PCP and neurologist. No diagnosis as she wasn’t compliant with MRI or CT scan requisitions.
Can my BIL force her into MC? Both he and my DH have DPOA. Plan was a visit from out of town BIL in a few days who will take Mom for a visit and never return to our city, as we’re in the process of moving out of State. BIL has brought up legal concerns about that yet I was under the impression from here that we can do that or am I missing something? I know once the nurse gets her medical docs we can see she will be needing assistance even though no diagnosis has been stated other than the neurologist stating at the only meeting he had with her and her sons that it looks like Alzheimer’s. Is guardianship necessary for her admission to the MC?
I am very unclear how long I can do this and feel very worn out. It was SO refreshing to go pack and organize, after having breakfast with her yesterday and not return until after visiting a girlfriend and her DH just working on a puzzle hours later. Sad thing is she never ate again and didn’t take her afternoon meds😞
I cannot thank all of you enough and how much this place continues to help and restore me knowing I’m not going through this alone.
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If he has durable POA then yes he can admit her to MC without her consent. Unfortunately that's many times the reason you have to have it. If you need to check the language on the documents, do check with an attorney to be sure. Perhaps the attorney who originally drew them up?
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You have DPOA..choose a MC, have her assessed + make arrangements to take her there. I get the feeling you may be still asking her opinion of things. She will not agree to anything logical, so make a plan and implement it. Input from her is counterproductive.
Many people take PWD to ‘lunch’ at the facility + tell them there that the ‘doctor says its best you stay here for rehab til you are feeling better. See you tomorrow!’ (maybe). The staff has been through this hundreds of times. If she is agitated, you may be asked not to visit for a few days or longer to have her settle in.
There are very few of us who have had to get guardianship to effect placement. You just ‘do it’. She may not like it, but thats the way it is.
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Hello! Just an update here. My MIL went to visit with my BIL and family a couple of days before we started our move out of State the week of Spring Break. So MIL has been with them for over a month. She has been compliant in attending doctor appointments there along with chiropractic appointments with my BIL. She even loves the family doctor she is seeing there. This doctor has even requested her medical files from her previous doctor who has yet to respond. Apparently she was on meds that she was only supposed to be on for a few weeks or a month, can’t recall the 2 prescriptions now, and that she has been on for a few years. He has taken her off those.
Last weekend my DH and I traveled to where MIL is and surprised her with a visit. She wants to go home. Monday we had the family intervention (I did not want to do this as I knew how it would go. Btw my DH does not agree with what most do and take their loved ones to a MCF and leave and visit later. My BIL and family are SO busy and I am sure MIL is bored after pulling all the weeds from their backyard!) My DH informed her as her eldest son that she has to stay here after informing her that she can no longer live alone. He told her he is doing this because he cares for her knowing she will never want help or ask for help as she is deteriorating and doesn’t recognize that. Of course she didn’t agree. It was a catastrophic event with her. She cried, shouted, slammed on the table that she wants to go home and she needs to tend to her yard. She even threatened leaving by hitchhiking, taking a bus, taxi and then finally saying she will kill herself if she has to stay here! It was awful. Us forcing her to stay with her family is a death sentence😔We called all her close friends informing them of her staying in this city and not returning where she lived prior. Please don’t come and rescue her if she asks and yes please visit when you can. Where she is located now a lot of family and friends don’t have to drive 6+ hours to see her now. She is 2-4 hours away from everyone including grandchildren and great grandchildren. She doesn’t care. She wants to go back to the house she has lived in since 1963.
This morning her late husband’s son’s wife died and the son called her. Now she wants to come home. She has been threatening my BIL she will get a plane ticket and just go. So now my DH is considering her coming back. We are currently in the city she used to live in as we are back here finalizing our house for the sale and he is trying to finish some old jobs at his business and get that closed up. I don’t agree that we should let her come back as she will NEVER agree to a trip to see them again afraid that we will keep her there against her will.
I’m venting and so very sad right now as I do not agree with her returning here without her being either in a facility that can help her or assistance that she flatly refused before she left with her youngest son last month.0 -
Also BIL states that they cannot force her into a MCF as his lawyer who drew up the DPOA (I don’t think he is an elder lawyer) stated that the sons cannot do that. So both my DH and BIL are awaiting letters from the neurologist she hated and from the family doctor we all don’t like where she lived, stating that she is incapable of living alone. Is it me or is this unnecessary? I am having a very hard time with all of this and just want to be out of here already with the grandchildren and not having to deal with this again. My SIL clearly told me that she is unable to give MIL the level of care that I was giving as she works from home and cannot keep checking on her like I was able to. Instead they want to send her back here!!!!
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well of course they want to send her back to you. They want to resume their normal lives and have you two deal with caregiving. I’m sorry but your BIL and his wife are in complete denial about her situation. This is HIS mother and he and his siblings from her have the primary legal responsibility. Unfortunately they aren’t going to step up. If the POA isn’t good enough to move her into an MC, then one of you is going to have to go for guardianship.
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Thanks for your reply!
We are only here for 3 weeks then we return to out of State to be near to the grandchildren. DH will be back and forth for the next few months and will not be caring for her. They were looking into MCFs before they came and took her so I am not sure why they are not following through with it.
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Could they explain the situation to a mcf. I’m guessing they will say the DPOA is all they need. With my brother it always about what mom wants, her rights, her privacy etc. Unfortunately with dementia some of that needs to go out the window to keep lo safe. It sounds like bil is in denial. I would also be concerned about her care at bil home. My mom lives with my brother who has his head in the sand and I have been shocked what he thinks she is capable of doing on her own. Planning for a move to al now. I sometimes think difficult family can be harder to deal with than a difficult pwd.
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Thanks for your reply! I appreciate your feedback.
I truly have no idea about the MCF stuff as they haven’t shared more than what they did with me when they came and picked her up last month. Everything you stated about your brother is exactly what is going on with my DH and BIL, her privacy, rights and wants, etc. I am sorry to read that you too are facing a similar situation😞This is very difficult. The funeral is on Thursday. DH is going to make a tough decision and BIL is in agreement. Just heard from SIL and she is doing better and even ate dinner tonight after her “hunger strike” for a few hours due to her anger against my DH. I just want them to stop talking to her and start moving her to a place that will care for her the way she needs vs what they want and cannot meet because they are SO busy!!!!
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You were correct in your estimation. I’m not even annoyed at them. Some don’t want to face this and are not meant to help with their family members in this capacity.
I was only meant to be here with my DH for 3 weeks. We have been here since April 26th and have been unable to return due to concerns with Mom living alone which we do not want and of course the family in the other State wanting to resume their normal lives. I’ve known they’re very selfish and it is ok. As I read in another post here the Calvary is not coming!
Sadly the home health company we used here has just been below par. Our expectations for this company were too high and my DH just sent a termination letter to them as communication seems to be an issue along with concerns with the aides they send. I think we used them for barely three weeks. I am going to help MIL and we are hoping to have some family friends help too.
BIL stated they will be here mid-June as niece will be out of school back in May. No such thing. Just found out tonight they won’t be headed this way until July. Our plan is to take Mom with us out of State to visit with her great-Grands. So much going on there since we have been here too. Heartbreaking really but I will spare you all the details.
I’m no longer overwhelmed as I spend time away more than I do with MIL. It’s healthier for me. Next will be nanny cams along with disabling her stove. Until my DH and BIL come to an agreement about her being in a MCF it appears she will get her heart’s desire of wanting to die in her house.
She is now on hospice care and has been after an ER visit which is great. Her nurse comes twice weekly. Her SW every month. A chaplain about once a month too I think. She also has a signed OOH-DNR in two locations in her house.
This site has helped me SO very much. I read tons and learn so much from so many of you so thank you. Each journey is different. I had a hard time with her returning in the beginning and felt resentful due to being here after spending 5 glorious weeks with the Grands. I’m realizing we may not have her for long and to just enjoy each moment. My faith keeps and sustains me so I am content there.
Thanks for reading :)
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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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