Went thru a move with MIL who has Alzheimers

oehlsena

We are getting settled in. She has late stage Alzheimers. She lived here when she was younger and we are hoping that being here will be healthy for her- that it may bring back more positive memories of the time before the disease. 

I find it so difficult to maintain a positive emotional connection and friendship with her when one moment she can be so sweet and kind, and the next moment can be aggressive and cussing me out, and then the moment after she is apologizing and emotionally distraught. Due to the fact that I met her after her Alzheimers had already progressed, I don't think that she ever really knows who I am or keeps memories of me. Oftentimes she asks me not to hit her "again" ever though I have never done that. 

It's been difficult to take the small victories of this move, which sometimes feel rare and in between. One positive moment was driving down a main road in town that she definitely recognized. Another moment was calling her brother who now lives only a few hours away, and seeing her cry for joy at reminiscing with him. 

I often find myself wondering how much longer she will hang on to life- but I am convinced that she still has a purpose on this earth as long as she is here. I have really been in an inner conflict about bringing up with family the possibility of putting her back in an assisted living facility. I am her primary at-home caregiver and it feels like the strain is too much for me. At the same time, SOME days, and sometimes, she is practically bedbound, and it seems that with her being in the final stages, that it would be best to simply let her live her life out here with us which she has always preferred to being in a facility.

I am sure this is not a struggle that anyone with caregiving experience for someone with Alzheimers is unfamiliar with. 

She also asks to go out to eat often or requests pizza, takeout, etc. which, with the cost of the move, we simply can't afford right now. 

I think for me that baby steps is the answer. I will be seeking more respite care and help from family to ease this strain. 

jmlarue

You sound like a very caring and sensible woman. It's so very easy to become overwhelmed and just worn out as the primary caregiver. Try not to complain to other family members, but do have calm, honest discussions about the possibility that you might not be able to care for her as the disease progressively gets worse. Are you willing and able to care for her if she becomes bedridden, incontinent, or requires hand-feeding? If not, the time to talk about these "what if" concerns is now. Ask them what they think should happen if you suddenly became ill and could not take care of her. Are there other family members to step into your shoes? If not, there needs to be a Plan B for putting her into memory care or a skilled nursing home. If she is in late stage ALZ, she is no longer a candidate for assisted living. I think everyone here has hopes that they will be able to care for their LO until the natural end of their life. Truthfully, few of us are able to endure all the way to the end. Don't avoid having these conversations with your DH and the other family members. You really need to know who has your back if a crisis should arise.

Nerdyblond

Hi oehlsena,

I find myself feeling the same way often. I am full time caregiver for my mom. Today I am going with someone to help find a home for her. I cannot do this any more. It is stressful, it is emotionally draining, it is taking time from my job, my kids, my granddaughter, and everything I want to take care of on my end for my family. 

This experience slapped me in the face with realities that I never would have thought of. Things like finances, retirement care, what I should be doing so my kids will not have to do this for me. It makes me resentful that my parents did not teach me anything about this, and now they need help and are completely STUBBORN about it.

I have told people that one of the biggest reasons the elderly hang on is because there is wisdom and knowledge to be discovered from them. They may not be aware of it but they are providing their offspring with tools to help them navigate their lives when they reach that point.

When I started this last year, I was excited about the prospect of connecting with my mom in a way that she would never let me connect with her. We are not close, but we are more or less friends. This year has made me more resentful towards her because she is getting worse, and complaining a lot, and trying to tell me she was a good mom and truthful and honest when she really was not. 

I'm the only one caring for her. I can't get help without paying for it. It has made me resentful to most of my siblings as well. 

I do completely understand what you are going through. Being here is part of my respite. Thank you so much for your post and connecting this way!!! God bless!

harshedbuzz

oehlsena wrote:

We are getting settled in. She has late stage Alzheimers.

Hello and welcome. I am sorry for your need to be here but happy you found this site.

She lived here when she was younger and we are hoping that being here will be healthy for her- that it may bring back more positive memories of the time before the disease. 

"Healthy" is relative. Bringing back memories may or may not happen. As time passes and the disease progresses many PWD express a desire to go "home" even when they are ensconced a home they've occupied for decades. In this case "home" is more a feeling of safety and security rather than a geographic location. And there's always a risk that there is a history there of which you are unaware that could be triggering-- an abusive parent or unhappy period in a marriage. 

I find it so difficult to maintain a positive emotional connection and friendship with her when one moment she can be so sweet and kind, and the next moment can be aggressive and cussing me out, and then the moment after she is apologizing and emotionally distraught.

This is the disease talking. You have to be able to accept that or you will struggle to be an effective and competent caregiver. PWD-- even in the final stages-- are able to parse the emotional content of your mood and behavior and will feed off it. Difficult as that may be in your particular scenario (it was hard for me, too, my dad and I never got along), in the long run validation and compassion will make the task easier. This short read helped me get to a place where I could consistently get there. 

12 pt Understanding the Dementia Experience (dementiacarestrategies.com)

 Due to the fact that I met her after her Alzheimers had already progressed, I don't think that she ever really knows who I am or keeps memories of me.

PWD often retain memory in a kind of FIFO format. Oft times, memories that do stick are those with a strong emotional content. Since you weren't around before her brain was damaged by dementia, she may not ever see you as her DIL. At best, she may see you as someone kind and trustworthy. By the stage you are describing my dad had lost any meaningful memory of my DH despite me being married over 35 years at the time. He used to refer to DH as "that tall guy Harshed is shacking up with". He recalled and adored my son who was in his early 20s at the time. 

 Oftentimes she asks me not to hit her "again" ever though I have never done that. 

This could be one of two things. The first would be a conflated memory where there is a kernel of truth to what she's saying but that she's recalling the details that are false. In other words, someone hit her-- maybe a parent or a spouse-- and she's feeling the same threat from you she would from them.

Or she could be interpreting your frustration or unhappiness- telegraphed through a curt answer, eye roll, tone of voice-- as a risk of a physical threat. 

It's been difficult to take the small victories of this move, which sometimes feel rare and in between. One positive moment was driving down a main road in town that she definitely recognized. Another moment was calling her brother who now lives only a few hours away, and seeing her cry for joy at reminiscing with him. 

That sounds positive. 

I often find myself wondering how much longer she will hang on to life- but I am convinced that she still has a purpose on this earth as long as she is here.

Unless something else kills her first, you could be looking at a long-term commitment.

You describe her as end stages, but TBH, she doesn't sound near that. An individual can live with Alzheimer's for 10-15+ years. My own dad clearly had issues as far back as 2005 and died in 2018; my mom's sister was showing signs prior to 2003 and died a few months before my dad. That you MIL is still verbal and clamoring to go out to eat suggests maybe stage 5 or 6. You don't mention incontinence, elopement or disordered sleep which would suggest her squarely in stage 6. 

This lists behaviors and stages along with averages for how long a stage can last. FWIW, my aunt was firmly in stage 7 for almost 4 years. 

TamCummingsLLC_DBATv4.pdf (txccc.net)

The FAST Scale lists even longer durations for the various stages.

3 Signs You Need Non-Medical Home Care | Pacific Angels Home Care

I have really been in an inner conflict about bringing up with family the possibility of putting her back in an assisted living facility. I am her primary at-home caregiver and it feels like the strain is too much for me. At the same time, SOME days, and sometimes, she is practically bedbound, and it seems that with her being in the final stages, that it would be best to simply let her live her life out here with us which she has always preferred to being in a facility.

I am sure this is not a struggle that anyone with caregiving experience for someone with Alzheimers is unfamiliar with. 

In your shoes, I would be insisting on respite. Your DH should be taking responsibility for her on his day off so that you can do whatever you like- lunch with friends, appointments, mani-pedi, retail therapy at a minimum. If there are siblings, they should cover at least one evening a week so you and DH can have date-night. Your should also have a couple breaks through the week. 

She also asks to go out to eat often or requests pizza, takeout, etc. which, with the cost of the move, we simply can't afford right now. 

Perhaps a picnic at a park would work for her if you can manage her out in public solo. 

I think for me that baby steps is the answer. I will be seeking more respite care and help from family to ease this strain. 

HB