Struggling with anxiety and depression as my mother just entered a Memory Care Facility

Jillsmom

My mother recently entered a long-term care facility and is in the memory care unit.  Although it is only been a week and a half since she entered I have seen a significant decline in her appearance and cognitive abilities and now she is experiencing some Daytime urinary incontinence which never happened before.

I was told it is best to keep my distance for the first week while she adjusts so I did just that. 

I've been visiting regularly ever since but it has thrown me into a deeper depression than I already had. 

 I am having difficulty relinquishing control over my mother's care. For example had a webcam that I wanted to set up in her room but it disappeared and I can't find it anywhere. The memory care director threw it away or took it. I had some questions for her and I was extremely polite not accusational at all but I sensed some hostility from her while she answered some very simple questions. I was told by the salesperson that webcams were allowed although a sign had to be posted on her door that said webcam in use. I never even had a chance to set it up. 

Another example :I  bought a beautiful love seat for my mother's room.  The memory care director said that it was a trip hazard so I made some adjustments  and there's no way in hell that she can trip over it. I am now afraid that the director will simply remove it from her room and throw it away. 

I I'm upset because residents are locked out of their rooms during the day. If she doesn't take her cell phone with her in the morning I can't even contact her. I understand their justifications for doing this.

This whole situation is heartbreaking. This is a top of the line nursing home. I am just so shocked at her rapid decline in just under 2 weeks of being there. The glossy brochures they give you and the reality are simply two different things. The memory care director is the queen and ultimately I have little to no say over my mom's care. 

II have clinical depression to begin with and my medication was just adjusted upwards but I am really struggling. 

II want to establish some relationships with her direct caregivers. I also need to get closer to the  acceptance phase so this depression can ease a little. I don't know what to do. I don't know who to talk to. I'm just at a loss. My husband has been a saint throughout this entire Endeavor I don't know what I would have done without him. However he is really great at compartmentalizing his emotions and I am not. 

II cannot find a good support group anywhere near me so that's why I'm reaching out here. 

How can I speed up getting to the acceptance phase?

How can I completely trust the care that is being given to my mom?

How can I help Mom transition to her new home?

How can i transitioned to this new normal? 

I do not really have any good friends here. I do not have an adequate support system. 

Back in the old days they used to call it having a nervous breakdown. That is what I feel is happening to me now. Please do not worry I am not suicidal.

II am so depressed lonely sad and worried about my mother. Jill

Stuck in the middle

Jill, my mother spent six years in a long term care facility.  I never came to like it, but I accepted it because I knew I had no choice.  She couldn't live alone and I couldn't care for her in my home.  I dealt with my depression with medication, talk therapy, exercise - the usual.

The serenity prayer helps.  We pray for the courage to change what we can, the patience to accept the things we cannot change, and the wisdom to know the difference,

MaryG123

Jillsmom,  please know that it is the disease that is causing the problems, not your decision to move her.  In addition, you are grieving the loss of your mother, and depression is an appropriate response.  Keep working on your own health while you all adjust to her new surroundings and routines.  Hugs to you (()).

Jillsmom

Thank you so much. Relinquishing control of my mother's caregiving has been very difficult for me.  I don't know how often I should visit her she is very close to my home but my visits ultimately result in increased anxiety and depression on my part.

Jillsmom

Thank you so much. The guilt is sometimes overwhelming and it doesn't help that she is begging me to take her home. 

Specifically what do I say to her when she begs me to take her home

rcbarr

I have been caring for my mother full time for about 7 months now, just recently I was thinking about the very thing you are going through, if and when I do move mom to AL, how will I react to that.  Unfortunately I don't have answers for you, suffice to say, God Bless you sister, I can only imagine what you are going through.  One day I am sure to walk in your very shoes and it breaks my heart to think about it, but I know it's coming and there is not a lot I can do about it.  I wish I had the words to help you.  Every response here (minus mine) is spot on.

Chrysalis2

Hi Jillsmom,

My mother who has AZ and has been in AL for five months is unsure of why she is there, is angry that she is there, and regularly entreats and demands that my father take her home. She'll say to me or my SIBS or dad that she's perfectly  healthy, was tricked, will be home shortly. When I visit her and these sometimes vitriolic statements arise I just might nod my head or say something noncommittal like "yes," or "I know it  feels really bad, mum," and I'll listen for a  bit, perhaps touch her shoulder or knee, but then I will deflect, before she becomes mired in rage or  despair. I might say , "Its a  beautiful day! Let's go for a  walk. Do you have a hat?"  Or, "will you take me on a tour of the changes on the first floor?" We may  look through the cards she has received is she wishes to  stay in  her apartment. 

I understand your mother is in the MC floor--my mother will be too, at  some point--so going outside or downstairs is not an option. The gist of these examples  may help though--listen, connect, deflect/distract.  Perhaps you could bring her a small gift--anything--so there is something to see, hold, comment on, etc. 

Remember-- take good care of yourself. I, too, live with anxiety and  I've found I can't visit as often as other family member's can.  This can lead to guilt, lots and lots of guilt. But what I am finding is  that it is not the number of  visits that matter (as most are forgotten), it is the quality of the connection between mum and me and the experience she has in the moments in my company.  

I hope that helps. Hang in there.

Chrysalis2

Jennisme

How often to visit…this is one that keeps me awake some nights. I’m not sure there’s a good/correct answer. I’ve read that it’s selfish to “choose “ not to visit, yet also that twice a week is plenty. In my case, my mother and I had a complicated relationship. She’s now been in hospital 52 days, was diagnosed with 2 infections and dementia. and I’ve run out of survival hormones that had me visiting nearly every day. I’ve started sleeping again and am now anxious and mildly dreading the visits. Will this get better? This is my first post; I do hope I reach someone. It feels traumatic, this part. Ugh.

HollyBerry

My situation was somewhat different. While my mom had dementia after a stroke, she was OK with being in AL and was overall pretty cooperative about most things. My partner with Alz. Will be the opposite and I dread that more than I can say.

Anyway, how to come to terms with imperfect LTC situations. Everyone says to get to know the staff members who actually care for your mom. They know exactly how often you're there. Chose your words carefully, offer thanks and positive comments when you can. Learn the chain of command and what to ask of whom - this is hard because it can be different on weekends. I had to think of it as a team effort, where the staff had expertise I didn't have and I had a different role as medical coordinator and advocate, since I had to manage all of her appointments and communication with providers. I let some things go and made peace with that.

Re actual visits - I love the advice you got above. We got into a routine of twice weekly, once on a weekend for a little longer, maybe an hour or so, and one evening during the week after work. Sometimes we'd just watch TV or I'd bring something to eat, some catalogs or magazines, the dog, whatever. They had evening activities a couple times a month and I'd join those with her when I could. I needed to feel connected to the place and the staff and feel like I knew their systems enough to trust them, and communicate honestly when there was a problem.

Another thing to think about. If the facility has been around for a while and the staff is experienced, they've seen it all. They are sizing us up, just like we are, and onboarding us to their facility just like they are doing for your mom.

Is there a chaplain or a social worker at the facility that you can get to know? I found both to be very helpful in different ways at different times.

I wish you the best in adjusting to this transition. Please check back with us and let us know how things are going.

HollyBerry

A couple more thoughts - I can't believe I haven't been interrupted.

If the visit itself is stressful, and it sounds like that's a given, try to pair it with something that helps YOU manage your own stress. Music? A stop at a nearby bookstore or the library? Find a nearby park and plan time for a good long walk? TJ Maxx, Goodwill, whatever shopping makes you happy? I remember days when I would drive out into the country in some random direction for 30 minutes with my music cranked, and by the time I was ready to turn around I felt a lot better. I knew every park and coffee shop near my mom's place. I would tell myself "do the hard thing first, then do the fun thing" on days when it wasn't going to be particularly fun to visit.

Shan

My mom has been in memory care for just shy of three months and I wish I had sage advice for you based on what has worked for us. Unfortunately, we (my sisters and I and staff) are still figuring all this out too. This disease and how it effects and manifests in each person seems to make it extremely difficult to generalize with a “one size fits all” approach. So to ask how often to visit, the answer will depend on so many things. How often can your physical and mental health, patience and schedule allow? And how does your LO react to your visits? Do they calm her and make her happy, if yes, frequent visits are good for her. But if they trigger her to be depressed, anxious or agitated then less frequent visits are better. And as she adjusts and as her condition progresses, you will have to always assess and modify based on how she and you are dealing with the visitation frequency.

Regarding cameras in the room, is it possible your mom moved them? If staff did, that actually is not legal for them to do, I guess depending on what state you are in. We installed cameras in my mom’s room primarily because we are monitoring her interactions with her dog. We were able to find a MC facility that would allow her to keep her dog and they even help with his care. We want to make sure he is still safe with her and she isn’t getting aggressive with him. When we asked if it was ok to put cameras in the room, our facility’s rules are they are allowed and staff needs to be told about them, told where they are in her room, and are not allowed to touch or move them for any reason. You might want to look into how your state protects those rights.

You mention having a hard time relinquishing control of your mom’s care to staff, and I think that is a very common concern. At least I know it is for me and my sisters. Prior to moving our mom to MC she was in AL and unfortunately was not getting any assisted care at all other than once a week apartment cleaning and laundry. So my sisters, myself, and care assistants we brought in while we worked were doing all her daily cares. So I know how hard it is to feel comfortable handing that off the MC staff. Especially when they aren’t doing all the things we did or they are not able to enlist mom’s cooperation to get them done, so instead of agitating her they don’t get done. For instance, if she refuses to let them help her get ready for bed, she will go to bed in her clothes instead of pajamas, she won’t brush her teeth, and she sleeps with her hearing aides in which means they won’t be charged over night and they won’t work the next day. When we bring these issues to the head nurse’s attention we are told that staff tried, but couldn’t get her to cooperate and they didn’t want to agitate her so they gave up trying for the night. I can see their point, but we chose this MC because they are a reputable facility that specializes in caring for Alz and dementia residents and for the price they charge I’d like to think their staff are better skilled to redirect difficult behaviors instead of giving up. So, I guess my advice for you is you don’t need to feel like you are giving up care of your mom, you are still needed to advocate for her and speak on her behalf when you feel she isn’t getting the care she needs. I totally agree that it’s a very good idea to find out the chain of command and ask who to direct questions and concerns to as they arise, because they will. And don’t be afraid to be that family member that speaks up and asks for things to be addressed or done differently if it’s not working for your mom. Yes, staff may have expertise and knowledge about this disease, but you are the expert on your mom and what has worked for her in the past. Even though your mom is living in a care facility, you and her other family are still important parts of her care team. But, even if you have to occasionally raise concerns or ask for a different care approach, make sure you are also openly appreciative and complimentary to staff for all the good things they do for your mom. It’s very important to keep communication open and supportive.

I’m so sorry you’re dealing with your own depression and anxiety on top of all that comes with losing a loved one to this disease. It’s excruciatingly difficult for even those without previous illness to remain mentally and physically healthy as we navigate this horrible roller coaster of emotions and exhaustion. Have you considered, or do you have a counselor that can help you deal with the stress and emotions? This online group is an amazing resource, and I’m so glad you found it and are reaching out for help. Also, the Alzheimer’s main website has a list of local support groups you can try. And, lastly, because this is way longer than I intended, I love Hollyberry’s advice to treat yourself to a special something, whether it’s a walk, a long scenic drive home, a shopping stop, a trip to a coffee shop etc, to get through tough visits. I’m going to be trying that myself. Thanks for the great idea HB!

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