Trying to control this is not working

Anonymousjpl123

Ever since life “hit the fan” a year ago (after my dad passed) and we all realized mom’s memory issues were worse than anyone thought, I’ve been running on adrenaline and fact finding. TLDR: this sucks and trying to beat it into submission by controlling it only pushes the sadness down, not away. In 8 months we have:

Gotten her to neurologist, MRI, thorough physical (first in years)

Found a great assisted living/memory care facility close to major hospitals 

Helped her move, unpack and settle (this week and last)

Her first few days she overall seems very happy. she sometimes complains that many people there “have issues” or “are disabled” but is happy with the space, people, location, and food. She has no idea how severe her memory issues are. We don’t have a formal diagnosis but it’s coming soon. But whatever, yesterday she asked me if leave out her shampoo so she could wash her hair and called friends, happy. Today she was down but I know this will ebb and flow.

Now that she is safe, I on the other hand cant stop crying. All I do is read about Alzheimer’s/dementia, try to figure out what stage she’s in, plan, prepare. It’s as if by trying to predict the next move, stage, etc. I will be able to control this horrific beast, and Things keep getting worse so quickly (although truth I have noticed small changes for years). Now it’s all happening: adult protective service involvement,  Incontinence (1 and 2), forgetting who people are, can’t figure out phone charger/remote, total disorientation. All mixed with periods of real lucidity - hours where she has no idea anything is wrong with her, knows all family members, the date my dad died, what time my sister will call her, etc. 

When she makes even the slightest complaint I freeze in terror she will hate this place and want to move. She gave up a lot. If she absolutely had to she couldn’t move in with me - Can’t imagine how that would happen, but it could and would if needed. I just hate seeing her feel ashamed to live there. First because it’s actually kind of a messed up attitude, and 2nd because it makes me realize how little awareness she has of her behaviors and changes.

This is all I think about, day and night, and my work has suffered. I’m officially that colleague who is not the reliable since Their “family issue” began.

I thought when she was safe, I could breathe but all I feel now is an overwhelming sadness. Thank you for listening. I live on this board because I’m consumed.

zauberflote

Anon, I'm no health professional, but  can tell you that your symptoms seem like mine when grieving. You have not finished grieving your father's death, and you have begun grieving the loss of the mother you once knew! That is a double whammy burden, and takes time to process. Give yourself grace and space to do what you need to do. 

Many may say that moving her out of the good place she's in would be a very bad idea. Very few PWD are delighted with their new circumstances, and most of them gave up a lot to arrive there. She would be no happier living with you in the medium-to-long run. She will have times of gating that place and want to move, but the place she wants to move to exists only in her memory. The best you can do is try to comfort her along. The feelings are real, but her stated solution is not possible. 

Lots of people seek therapy with a professional when they overwhelm themselves-- is that something you have thought about?

Beauchene105

I'm so sorry you're going through this difficult time, and I agree with zauberflote. Based on my experience with my own mother, who has been at her AL for several years, it's a positive thing for PWD to begin living at the AL while still in reasonably good shape, even if they deem themselves "in better shape" than those around them. As time goes by, I have watched my mom gradually take on many of the characteristics you'd expect. This gradual change has been a positive thing because it keeps her from realizing she's changing. Please don't expect your mom to "just love it there", because it's very hard to give up your home -especially when the home has been sold and there isn't a home to go back to. As zauberflote said, the home they'd like to return to exists only in their minds. It's a hard road and you have come to a good place to get wise and caring advice.

Anonymousjpl123

Thank you zauberflote and beauchane. Your time in reading and responding is a gift and I truly appreciate it.

I agree - she can’t and should not move, even if the adjustment is hard. The first few days were a honeymoon because she was shocked at how nice everyone was and the relief that she doesn’t have to actually worry about a 3 bedroom condo by herself. Plus my niece and I basically stayed with her all day unpacking for 4 days.

Now I think it’s sinking in. Actually what is even more painful is because she is more relaxed, she is starting to notice changes more. She called me this morning saying we had to take all of her things she loves to my basement because they will get stolen. Last week she was worried everyone there was rich and we couldn’t afford the place. This morning she was worried people don’t have a lot of money and are going to steal her things.

But what what really stops me in my tracks is when she seems’  to notice. This morning she said “I just feel weird. It’s like I’m paranoid or something. And I never wanted to be that way.” This could be the dementia or being alone the the first time in 60 years.

She was never an independent person (soooooooo dependent on my dad) and now I think she must be utterly terrified. How should I respond to that? I do my best to be comforting but it never feels like nearly enough. We were never even close - my friends are like this is the most time you’ve spent and talked with her in 40 years combined - but becoming responsible for her I feel I absolutely must do it with love.

Anonymousjpl123

Also yes I am in therapy and I cannot imagine how anyone goes through something like this without it. No shame in that game for me lol. Seriously I Don’t know how I would do this without it/

zauberflote

The dependence is a tough one. My dad died when Mom was 69, and she never looked at another man as partner, although she certainly enjoyed their company in groups! She built herself a life which included a 2BR apartment blissfully alone (not lonely), and a thriving social life. Even so, when she was about to leave that life for AL, her PCP prescribed a little something for anxiety and depression. It may have been sertraline. (EDIT: it was ativan.) It could be that your mom, still grieving too, is anxious about anything and everything. 

It's funny you mention "everybody else is rich"! Mom had only two ALs to choose from-- a glitzy brand new one, and a frumpy old non-profit one. She chose the old one, because a friend of hers lived there (disastrously, that friend got sick and died days before Mom moved in, but management was not allowed to speak of anyone dying), and because she felt that everybody at the new place was too rich for her. After that, fear of insufficient funds was one of her themes. She had plenty, and in fact left a few thousand to us when she died, so we'd just tell her that Brother had taken care of all that, and yes she had enough to take me out to lunch!

May flowers

It is very hard, but I know from having gone through almost every stage with my FIL (living at home, living with us, living at MC, back to living with us) there comes a time that they are just not content with any living arrangement. I think deep down what is bothering them the most is not the changes of environment, but the changes happening inside them and loss of control. Not that they can really process that, but it’s kind of like how they have physical pain and act out with agitation.

Anonymousjpl123

I think you are both right, zauberflote and may flowers. I think she is nervous and anxious about everything because of her dependence, and sad to be losing the “home” you describe. But I have to say I visited her tonight after work and Jesus was she better. I think it does help that I’m so so close. She’s making her space hers, and was in a super good space tonight. I think this is going to take patience, honesty, and an openness that things can change in an Instant. I’ll tell you what though having her in a safe space, with care, is a miracle. She’s not a dandelion blowing in the storm. Thank you. And thank god because that was brutal. As hard as this is, it is 1 million times better than her living alone.

harshedbuzz

Anonjp-

I am sorry you find yourself in this situation.

I think it's especially difficult to "inherit" a PWD after the passing of a spouse who was likely providing much support and scaffolding. It becomes an emergent situation as you try to assess the situation and put plans in place which forces you to defer processing the emotional piece until you have safely tied up the loose ends at which point you have time and space to crash.

You have done a terrific job of getting mom into a safe place. Kudos to you. 

Some random thoughts.

1. In addition to talk therapy, you might want to consider a trial of medication to help you get to a place where you can coexist with your mom's diagnosis while maintaining the life you have built for yourself. If you are already taking something, you might want to revisit dosage for a time.

2. Meds might help your mom. Dementia is not just about memory. Executive function is also impacted very early on and strategies she may have used to deal with anxiety are likely no longer available to her especially now that she doesn't have her husband. An appointment with a geripsych could improve her quality of life. Meds can be helpful around delusional thought and paranoia by making it easier for the PWD to accept validation and redirection strategies.

3. Job one as caregiver is safety. Assuming she is in a secure unit, you have managed that. People here sometimes talk about creating moments of joy but sometimes this disease makes that very difficult to make happen. Sometimes safe and cared for is as good as it gets. 

4. Planning around dementia is a challenge. Aside from getting the legal and financial pieces sussed out, there isn't much that you can control. One piece that some folks don't consider is thinking about the advanced directive and how aggressively you would address medical issues going forward. Since you have sibs, that might be a useful conversation to have.

5. You can get a general sense of where your mom is based on behaviors and symptoms, but it can be hard to know when the next progression will be, whether it will be a gentle slope downward or a sudden drop in abilities triggered by a medical event. While the outcome of dementia is the same, the path and timeline can really vary.

6. Sadness is to be expected. This is a horrible disease. But please understand that the choices you are making to be sure mom is safe and cared for are good ones. You are not doing this to your mom-- the disease is.

HB

glitz4ever

Good morning, I am looking for advice.  May mom and dad were both in the hospital and then rehab.  My mother came back to the assisted living facility before my dad.  Because of her demintia, history of falling and lack of staff at the AL, I hired extra care givers who were with her 24 hours a day.  My mom flourished.  Responded well to PT, joined in the AL activities including poker. Made several friends.  She seemed to really like her caregivers.  However, she did miss my dad.  Afrer 6 weeks, my dad was discharged from the rehab facility and returned to the AL.  Unfortunately, after 6 weeks of getting over covid and of not getting out of bed, he was weak, unable to get in or out of bed on his own and was not able to use the walker to be mobile.  So, the caretakers I had retained for my mom, jumped right in and began to help him with all his needs.  All of a sudden, my mother hates the caregivers, calls them pigs, hoes, bit***s and wants them out.  Yells and screams for them to get out of her house, she does not need them.  Thinks they are having relations with my dad (93).  My dad get anxiety when she acts out, he finds it hard to breathe, is getting more and more depressed.  All he wants is peace and quiet and the assistance he needs, since he cannot do things on his own.  I cannot stay with them 24/7, that is why they are in assisted living.  I don't know what to do.  I have asked the caregiver to take a few days off to see if my mom will have a brain reset.  She says she wants to go home, however, this is not an option (long story).  I am exhausted.  I have taken care of them since March 2nd, 2020.  And I continue to see them everyday.  I have also contacted her doctors and she has increased medication dosage.  If that doesn't work, what can i do?

mommyandme (m&m)

It’s hard to do, but at each new symptom or stage… acceptance is so valuable. It creates patience and calm in some of the most chaotic of times.  Accept and adjust is my mantra.  Our LOs cannot adjust so we must.  Sounds like you’re really doing a good job for your LO.  

Thanks for sharing!