Caregiver depression?

Anonymousjpl123

Hi everyone,

my mom is doing relatively well. She is in AL, with a lot of support from me. I suspect if I went less then 3 times a week she would be in memory care.

for now, it’s ok but it is wearing on me. I work full time. Others have it so much worse: caring for LO at home, etc. but I’m the primary caregiver and it takes a toll.

im always tired and my time never feels like my own. Sometimes I can muster gratitude but not today.

im already in therapy.

ideas? Any way to manage? I don’t want to feel like I’m just waiting this out. It’s too awful.

thank you!

MP8

Hi, Anonymous. You're doing a lot! It's no wonder you are worn out. Would you feel comfortable taking one day off from visiting this week or next and using the time for whatever seems most relaxing for you? I find that sometimes getting out of a routine can really be refreshing.

If your mother has friends who could visit, could they help with visits so that you could cut down the number of times that you are going each week? Or at least occasionally?

People keep telling me how important it is to take time to care for myself but I know it's easier to give the suggestions than to actually do them.

Take care.

Klako

Hi Anonymous,

I like you struggle with this. I was seeing my dad every day. I have started to take one day off and sometimes two and he seems to do ok with it. I am not overly descriptive of why I can’t come I just say I can’t come tomorrow. I don’t call him either on that day. Initially I tried to but he either didn’t answer or his phone was not charged. He can still call me and sometimes does on those days because he forgets I am not coming but a simple reminder works.

My dad is not overly social and doesn’t participate in activities so it makes it hard as I know he is just by himself when I don’t go.

We did just take along weekend vacation which I highly recommend doing if you can. It was a great break for us. I had our two sons and his brother come to visit in my absence.

We all need a break and although for me it feels selfish I think it keeps me sane and more healthy for him.

CatsWithHandsAreTrouble

Sounds like you need more time for yourself. It is great that you're getting therapy, that will help though it may be slow at times.

I also work full time and am my mom's primary caregiver; I and my younger sister live with her and my dad as her caregiver. It is difficult, yes, but you cannot compare yourself to others. You are a unique person with your own wants and needs. You have to put yourself first, baring any medical emergencies that come your mom's way. Leaving your safety and wellbeing up to your perception of strangers managing better or worse than you is a fast track to long term burn out. I am there currently and have been there for over a year; don't let it get you too.

I like to imagine it as everyone has their own plate of stuff that they're carrying. They might have a stone plate that is too small or a large paper plate that is too flimsy. Me, I'm a large paper plate kind of person.

Anonymous, it might be past time to consider moving your mom to a certified memory care facility. Please reevaluate the decision to keep her in AL; it will be beneficial to you both.

BookBuffBex

First, know that you are not alone. Second, acknowledge that you have to make self care a priority in order to care for others. You won't be doing your mom any good if you get so depressed you can't function (I speak on this from personal experience).

Think about what you can truly handle, what the AL is able to do, and what next steps might be. Can you talk to someone at AL, or your mom's doctor, about what is involved in a move to MC? It's not giving up to admit that you need more help.

As for self-care, think about what you need and what might work for you. What are your hobbies that relaxed you before all this started? I love reading, playing word games, and TV/movies. I try to set aside at least 30 minutes a day for reading. During the worst of it, all I can handle reading is romantic fiction and watching Hallmark movies. I need to lose myself in a world that always has a happily ever after. I also make time for regular pedicures. It's not everyday, but I always feel good when my therapist asks me what I'm doing for self-care and I'm able to say I took the time to do something just for me!

Robbie

Hi Anonymous,

I'm so sorry. What can I do here to help?

When my mom with Alz was staying with me I would find myself putting her to bed at 8pm and then staying up until 1 or 2 just to be alone. It was the only time in 24hrs I got to make any choices about what I wanted. Shouldn't I be getting enough sleep to be a good caregiver instead of watching old episodes of "Teen Mom?" Was "The Bachelor" more important than going to the gym or doing a yoga video? No but it felt good. It's so frustrating.

You said "others have it so much worse." I'm glad you said that. That guilty feeling seems like it will never stop and it's so hard to explain it to others.

Wishing you peace.

Debra

Hi Robie,

I do the same thing with my husband I put him in bed and stay up until 1 feeling quite calm knowing it is my time. I watch re-runs until I fall asleep. Maybe we need this time to ourselves. I worry too that it may not be such a good idea to stay up so late but it feels good to me. I enjoy that time at night. People try to tell you what to do like go to a gym but I don't want to do that either. Maybe we are doing just what we need and that is perfect for us.

Deb

Quilting brings calm

What are your three times a week visits like? What is it that you think the visits do to keep her out of MC? I’m asking because it’s possible that you could cut that down to one or two. If you are doing something like housekeeping or laundry during that time, why isn’t the AL doing it? If you are going through her mail, get it sent to your place instead. Review everything you do during the visit to see if it can be done by someone else, done fewer times etc. if you are bringing her supplies, think about ordering them online and having them delivered.

If your visit consists entirely of you listening to your mom complain about the AL/physical ailments etc, then you can legitimately cut a visit out a week. That’s what the visits to my parent’s AL consist of. So I go once a week now unless I need to be there for something. I call multiple times in between.

If you really feel that you can’t cut out a visit, then start figuring out what chores you can cut out of the rest of your time. Can you hire someone to do your housework, mow the lawn? Can your order your groceries etc online rather than spend time shopping?

I do understand, even if the above doesn’t sound like it. My parents went into AL four months before the COVID restrictions were put in place. They constantly needed something, made up reasons to go to the doctor so they could get out. I ended up retiring in December 2020 because of the time constraints and the stress from them and everything else. An injury to me caused me not to see them ( or do anything at all) for 8 weeks in December 2021 and January 2022. That caused me to realize that they didn’t need me as much as I thought. That’s when I realized once a week was good enough.

M1

Hi Anonymous. Hard question: is there a reason you don't want her in memory care? Does if feel like failure to you if that happens? Or is it a cost factor? Because the disease will progress, no matter what you do; and if memory care is the level of support that she truly needs, wouldn't that probably be better for both of you? If you are burning yourself out doing what you're doing now, you are not doing either of you any favors. She needs you, of course--but all the more reason you need not to burn out so that you can be there for the long haul.

I wish there were easier answers.

SDianeL

Look for a caregiver support group. We have one in our area that meets and walks together once a week in the mornings. I haven't been able to go yet but it sounds wonderful. Sounds like you have guilt which is normal. Keep with the counselor and find a support group and plan time for yourself into the schedule. I know how difficult it is. I'm the caregiver for my husband who is at home. I filed for caregiver aid through the VA last October and it hasn't kicked in yet.

Anonymousjpl123

Thank you all for your extremely wise and caring comments! I never saw the responses until now, and am sitting here in tears because you all understand at a level that none of my friends do. sorry if this is a long post, Im just so relieved to have people who get this.

3 times a week visit goal was because she really is deteriorating. She still gets up, gets dressed, reads paper, occasionally socializes. She was going for meals, but stopped because she felt she had gained weight. When staff came to ask her about why she wasn’t going down and she was very rude to them. She was doing OT and PT (included, they come to her room 2 or 3 x week) but now seems to barely do it or shoo them away.

During our visits we talk, and she does remember stuff she used to like (e.g. she used to study Chinese, and recently mentioned she may pick it up again!). She wants to hear about my day. I think she feels…normal…comfort. Familiarity.

She won’t do any activities. She only recently started walking with me. We go to dinner/lunch, and now it’s warmer so I try to get her to walk. Other than my visits she never leaves the building.

My niece had moved down here and comes once in a while, but not much she is young with a lot going on. No other family involved on a daily level.

I do think about memory care. My biggest problem is the diagnosis. She has never formally been diagnosed. I finally have her seeing a primary care doc at a very reputable hospital internal medicine unit, but her regular appts are with a very inexperienced resident and his supervisor. The memory issues are discussed every visit, but they seem to think it is connected to her mental health (anxiety depression after my dad who she was married to for 60 years died). Truthfully the anxiety depression is not new or the cause. She literally has dementia. There is no other explanation. Last week, she said she didn’t think I could drive to our accountant because the neighborhood he is in (in NYC) is in California, and too far to drive to. She literally thought the NYC neighborhood was in California and we discussed numerous times. She forgets everything. She repeats herself on loop. But she has moments/hours of lucidity. The staff have at times expressed alarm at her disorientation, and then I come, and she calms down. Doctor has pushed mental health counseling” for memory issues, which seems absurd to me, but he also does great managing her other issues (diabetes, hypertension, thyroid).

They (building staff) don’t seem to feel she need memory care yet, but we all know it is coming.

I have never had a real reading of her mRI results.

Everyone who is daily contact with her knows the challenges, but without the diagnosis it is hard for me to push memory care. Plus I don’t think she would go for it. But truth be told, her level of cognitive ability and memory diminishes every day.

maybe my real issue (just getting at this writing) is that I need to have real honest conversation with the doctor so he understands what is happening. That this is not just depression/anxiety. I see the difference because I knew her before and all of us saw memory issues years before my dad passed. What a drag this disease is.

Iris L.

Anonymous, your mom sounds a bit like me, in that she may have memory and cognitive impairment due to multiple disease processes that have memory loss and cognitive impairment as complications. Her diagnosis may not be Alzheimer's Disease, but "dementia not otherwise specified". If you look that up, it may help you understand. Note, this is an archaic diagnosis no longer on the latest DSM.

As far as diagnosis, it is important to rule out reversible causes that can be treated. Keep in mind that some diseases, such as diabetes, are inherently degenerative and deterioration may continue despite treatment.

If the diagnosis is indeed dementia nos, the dementia will progress but will be unpredictable. What you can do is do everything you can to enable caregiving that is suitable to both you and the patient, your mom, like what the other members suggested above.

Also, I don't recall if your mom is on an antidepressant. Major depression can mimic dementia, this is called pseudodementia. The treatment is aggressive treatment of major depression, with anti-depressants and some type of talk therapy. In your mom's case, grief counseling may or may not be of benefit. Ir depends upon if the patient has insight into her situation. Meaning, if she does not have anosognosia. Are you familiar with this term? I just reread that your mom had memory issues before your dad passed. Probably not so much due to grief, but grief may have some small input.

Has she been evaluated by a neurologist? The other important factor is to be on the look-out for progesdion over time, because dementia is progressive, in one direction.

I was interested that you said your mom is interested in studying Chinese. This does not sound like a person with dementia. PWDs cannot learn new things. Personally, as part of my own treatment for cognitive impairment nos, I have begun to study Spanish. After three years, I am making slow progress. I have to repeat a lot, but I am learning!

Iris