My Mother-In-Law says NO to assisted living, what can we do?

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Let me say first that I am so glad I found this site. The people here are amazing and I am humbled and blown away by the commitments make to their parents and extended families. You are unbelievable - but please find ways to take care of yourselves!!!

When I share info about our situation I find that my concerns are SO much less work than what so many of you are doing ... that said I still would welcome all your life experience so please respond.

My MIL (mother in law) is turning 78 next week. It's been about 2 1/2 years since her husband died of cancer. The last 2 1/2 yrs have been very hard as we have tried to be there for her - often to our own peril.

In the last month, we've explored assisted living with her and tried to be sensitive to her thoughts and wishes. She was clear that she didn't want to move in the next few months as she wanted to enjoy the spring/summer in her condo and enjoy her balcony. We toured a couple of AL residences and she "made a decision" the day she toured (for the second time, first time around a year ago) that she would submit an application and put down her deposit. She completed the application but didn't have a cheque so indicated that she would drop off a deposit later. There were suites currently available but the application would have been to move later (and be put on a waiting list).

I spoke with her tonight and she said that she had changed her mind, was not ready and had talked to her sister in law (also living independently but is active in her life - volunteering, etc). I was completely overcome by her decision but went along with what she is saying because although I don't agree (and neither does my husband, her son) she is not likely to consider our thoughts. I've received calls from her neighbours expressing their concern about her wellbeing. She lives like a hermit - only getting out to do banking and see the doctor. Her only social outings are with us.

She has not found a way to start living her life again - she is only existing. She is having difficulty with memory - forgetting things (don't know if she is managing her medications or not), believe that she is not able to keep up with bill paying and has had a few falls. She usually sends birthday cards and cheques to her adult children and to her grandchildren but is behind in this by several months. She is overwhelmed by these things but cannot give them up - or just write a cheque and 10-20 words of greeting in a card (she wants to write a letter with each card - but finds this too hard to do). I recently typed a few letters on the computer for her to enclose so she didn't have to write everything over and over again by hand.

Her nutrition sources include: Boost, baby food jars, toast and occasionally more substantial food. We invite her over for meals or out to dinner every couple of weeks. We cannot manage more than a meal together every week.

She has no real friends - she has family and a few acquaintances. So her social interactions are 95% with us.

Her sleep schedule is quite disturbed and she frequently sleeps most of the day. She is up at night quite a bit. She has been on an anti-depressant for the past year or so and plans to come off soon.

We cannot have her live with us. We both work full time and I have an emotionally demanding and time intense job as a social worker. I have little left to give ... and I don't want her to rely on us ... I want her to take whatever responsibility she can for her own happiness and build a support network that includes more than my husband and I.

We know that she is not managing on many levels but cannot take on more responsibility for her. We are looking for advice on what we can do to help her build that support network.

I am thinking of scheduling a time for a long term care assessment (focussing on services that she can access while living in her condo rather than on trying to have her placed somewhere). Please help us find our way to help in a way that preserves her dignity and our sanity.

Thanks

Barb

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Dear overwhelmed, with dementia, decline can and will happen rapidly, especially if they are already having memory problems. So, it will come to a point very quickly that she will not be able to handle finances on her own. Then you will be stuck with a nightmare, and waiting for all the necessary paperwork etc. before you can help them with their finances. I know, this is what happened with my dad, and before I could legally help him, other financial problems piled up. You don't want that, trust me. And with dementia, they have dilusional thoughts that people, especially their loved ones, are trying to steal from them. You don't want that to happen before you can help them.
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I wrote the longest post, but most of it got lost. And I'm too tired to rewrite it. What you write describes my Mom so well. And I've been wanting to think Mom can handle things on her own. Just hired a nurse and physical therapist and Social Worker to come to her home. But Mom's not cooperating, rejecting their suggestions and recommendations. She's self-medicating with narcotics, which aren't helping her pain, and they just started her on an anti-anxiety med, which doesn't seem like the proper one for her. My Mom says one thing to one person, or one day, then changes it the next moment, or with the next person. Not a good scenario. I live 200 miles away, and am tired of the phone calls, the emergency trips (she wanted to call an ambulance and go to ER again today, after just having gone last week 2 days prior to Cancer Surgery). I'm tired of being a yo-yo, and leaving Mom, only to hear her complain, say she doesn't feel well, isn't eating, etc. Next week is D week. D is for decision. The doctor either helps me move her, or I'll find one who will. My sis lives even further away, and she's been pushing for change. Well I made up my mind today. Mom is moving to a nursing care facility where she can get the help she needs. Either that, or you'll can visit me in a psych ward.

Barb, this is a difficult road. Read all you can. Your MIL sounds so much like my Mom. I am telling you the best I can, get Plan A and Plan B in place quickly before you and her son are scrambling. They don't get better with dementia, only worse, in most cases. I'm praying for you that you have wisdom and discernment. Sorry for using your thread to vent on.
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Dear Barb, I soooooo understand what you are saying and where you are at right now. The discovery of dementia is alarming
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Overwhelmed, in my state you don't want to give in to conservatorship without trying other avenues first. POA can be powerful in many ways, but you may have to seek a doctor's assistance or someone else involved in her health to encourage her as AL being a good thing.

An attorney I went to go see about possible legal conservatorship and guardianship regarding a situation with my parents said no way do I want the courts involved if possible. He asked me if I had POA, if I had done any of the following steps (asked me a list of questions I replied yes to doing), and he said I did what was right and to stick with the POA.

That aside, have you talked to her about the fears of not going to AL? Now many of them are more like 5-star hotels. To be honest, I could handle one no problem. Less to worry about and go on enjoying life! Let someone else clean my place and cook for a while.

It is a life-altering event for her and can you imagine her fears as well? I think that is important to consider with this whole event.
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Thanks Naus, Sister-in-law lives in another province (like a state) all the way across the country - and MIL does visit SIL (think a visit around a week is all either could manage without some falling out).

We are still learning about dementia - not sure if she has Alzheimer's or not but the memory loss has definitely started. Think she has made arrangements for power of attorney - one is her son, my husband - but her doc would have to deem her incompetent and we don't want to take away what she can manage of her own decision making.

My parents have both passed and we had a really challenging time with my father after my mother passed. However, we lived out of province then and were not able to help in a big way - but I did assist him with his finances and bill paying which I think was good for him.

Thanks for your reply ... I am open to all the ideas.
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Dear overwhelmed, why not make a suggestion that she and her independent living sister in-law, live together. They can then help one another. Just a suggestion, but it sounds as if she has alzheimer's or dementia. If she does, I am sure you already know that she cannot live alone anymore, and will require 24/7 supervision and care. Also, maybe you and your husband can file for guardianship/conservatorship, and then she cannot refuse the assisted living option, if it is in her best interest, and safety of course. It sounds as if you are already on the right track for finding the support she needs. Good luck to you, and keep us posted on your journey, we can learn from you.
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