New here(53)

FlowerPower82

Hi everyone! I am new to this website. My MIL was offically diagnosed in June of this year. Although, we started noticing symptoms  about 2 years ago. My husband, sister-in-law, and I are all highly involved with my MIL. We manage all of her finances, appointments, and medications. She is no longer driving so we also drive her to all appointments and actvities. We've set everything up for her at her apartment so she can order her own groceries. She does manage to feed herself. She can no longer cook or follow a recipe, but she can heat things up in the microwave if she wants a hot meal. It does appear that she's eating, not well, but she's eating. She can also manage to keep things neat in her apartment.

We take her out to our house or on an outting every Friday or Saturday. My husband also goes over and fills her medication box every Sunday and visits with her. My husband and I both work full time. We have two kids. Both have actvities and things that they do for fun. We try to call, text, or email several times a week in addition to the visits. My sister-in-law keeps in touch with her mom and talks to her a few times a week. She tries to visit her a couple of times a month, because she lives 45 minutes away and works full time herself. Even with all of that, my MIL complains constantly about feeling lonely and isolated. She's stated that she feels like a prisoner and we're causing her to not have a life. She's made a friend at her apartment complex, but she's never been a particularly social person. We've encouraged her to go with her friend to do some of the actvities that her retirment complex has going on, but I understand that may be overwhelming for her at this point. She does speak to a therapist bi-monthly. However, since she can't drive, we arranged for that to be a phone call. We tried virtual appointments for her in the past, but she has trouble with technology.

We're at a loss on how to help her. It seems we'll get daily phone calls, texts, or emails from her in a panic for about a week straight. She will just sob and tell us she hates her living situation and feels isolated. Then it'll die down for about a week and then the pattern will repeat. Each time the panic will reach a peak. It will get very bad and we'll get several calls or texts in a day with her in a panic. This last one she called and said that we needed to come get her out of her apartment because she thought she was going mad. 

We did have her living with is for a while. That really didn't work out with my two kids and her schedule being very different. Her sleeping pattern was off and she'd keep my kids up while on the phone or moving things around in her room that shared a wall with my son. Plus, she said she wanted to live on her own after my FIL passed away. It was her choice.

Each time we get these calls or when it's in person, we'll listen to her concerns. We'll try to address them with her and hear her out. I know it's probably awful, but sometimes we will ignore the texts or emails. It just gets to be so much. 

She has her good days and bad days. Most days her memory is somewhat intact. However, her short term memory is non-existant now. Some of her long term memories are gone or confused. She can't remember her children's or grandchildren's birthdays. Her birthday passed recently and she had no idea it was coming up. Her cognitive functioning is very poor according to her evaluation. It does take her a very long time to learn to do something. Luckily, I have a background in Special Education and was able to teach her to use the washer and dryer. 

I understand that her concept of time is very poor. She's told us that the days all seem to blend together. Most of the time she can't tell you what day it is. She does keep a calendar and marks the days off, but that doesn't seem to help much. We also got her a large digital clock that tells her the day, time, and month. We try to be understanding that when she has these break downs it not her, it's the disease. We know she's severly depressed and anxious. She is on medication for both. 

We're just not sure how else to help her. I should also state that she is deathly afraid of us putting her in a "home." My husband, sister-in-law, and I are at odds on where she should be living. I feel it's time to move her to memory care because she's barely functioning and clearly terrified to live alone. My husband and sister-in-law belive that she should remain in her current apartment alone until she literally can't live on her own. We're looking into a service that might take her on outtings during the week. We're just not sure she'd enjoy that because she does get overstimulated easily. We've also considered an Adult Daycare, but we're unsure how those work. Plus we're not sure she's at that point.

I could write more, but you all know the situation well. Thank you for reading my post. Any advice you have would be helpful. 

Quilting brings calm

I suggest assisted living.  They would provide meals, daily activities, laundry, housekeeping,  medication management,  some outings, and would have  someone in the building 24/7.  She could retreat to the apartment if she felt overwhelmed but would be able to socialize when she wanted.  She doesn’t sound bad enough for memory care.

M1

Welcome to the forum.  I think your instincts are correct, her behaviors (the frequent phone calls, etc) are clearly telling you that she doesn't feel secure in her current environment, even if she can't verbalize it.  I would absolutely investigate assisted living facilities near you sooner rather than later, and they will have a team that can help you decide what level of care is appropriate.  Do you have power of attorney?  That person has the decision-making power.  If none of you have it, that needs to be your first order of business.  If you read a lot of threads, you will learn here not to be surprised if she is unwilling/unable to cooperate, you may have to do this without her consent and without discussion with her.  Safety needs drive the decisions at this point, not what she (says) she wants.  That's a hard fact for some families to get their heads around, but it's the rule, not the exception.  Good luck, you'll find a lot of support here regardless.

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rleon

Hi all! 

My father, age 84, has been experiencing memory loss over the past 5+ years. My mom cares for him, and they have been doing just fine together, for the most part. She was hesitant to get him diagnosed with anything official, then covid hit, and now... here we are, still without a diagnosis. She is concerned about my dad's pride and hates talking about him with medical professionals in front of him, but he has started to decline even more, recently, and I think she knows she's in over her head.

So, my big picture questions is...is there a benefit/up-side to having an official diagnosis? My brother and I are pushing for a doctor's appointment and other follow up, but my mom is dragging her feet. Is this a battle we should pick, or is the effort of getting an official diagnosis more trouble than it's worth at this point?

Thank you!

R

Iris L.

FlowerPower82 wrote:

We're just not sure how else to help her. I should also state that she is deathly afraid of us putting her in a "home." My husband, sister-in-law, and I are at odds on where she should be living. I feel it's time to move her to memory care because she's barely functioning and clearly terrified to live alone. My husband and sister-in-law belive that she should remain in her current apartment alone until she literally can't live on her own. 

This is what will happen.  One day someone will find her on the floor because she fell and couldn't get up.  You won't know how long she has laid on the floor.  She won't have the cognition to push a button to call for help.  This is what happened to my aunt with dementia.  This just happened to my frail elderly neighbor without dementia.  However, she was able to press her medical pendant button at 2 am and get help.  I told my neighbor it is now time for her to have someone in every day, at least.  She has refused moving to assisted living.  Her cognition is normal. 

Your MIL is functioning on a below adolescent level.  She already should not be living alone.  She cannot take care of herself.  PWDs (persons with dementia) have anosognosia, which is a characteristic of dementia that causes them to be unaware of having limitations.  If you try to confront them with reality, they will resist and become upset.  The family will have to make decisions and use work-arounds to get them enacted.  The members know the work-arounds.

This is hard to know but this is reality.

Iris L.