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I am feeling guilty about the extent to which I visit an Alzheimer's parent who is in a memory care facility.


I was going more often in the past but now I havent been for about 6/7 weeks. I work two jobs. One full time, the other part time, in order to be able to afford to live. I also have a health problem dragging me down and sapping my energy resources. The memory care facility is far away from me and I dont have a car. So I need to use lots of public transit to get there. It becomes at least a half day activity for me to get there and visit and get home again. I find myself so lacking in time and energy to make this happen lately. Between my two jobs, trying to stay healthy and personal admin/errands, the time for the visit seems to vanish. And its not like it forms any relief from all the work grind that has become my life and is just another unpleasant form of "work"or errand.


The other thing is that I do not enjoy the visits at all. The parent has advanced alzheimers. So its difficult to know what to do, They are hard to talk to. They dont understand what you are saying usually and their verbal communication is going so often they say gibberish when they talk. And they cant really eat properly and need to be fed or dont really want to eat. The attention span is really short so its hard to watch TV with them or something. They also dont control their bodily functions so will just urinate or deficate while you are there. So overall I find it really uncomfortable and unpleasant and I am not sure what to do while I am there. Any ideas on making visits more pleasant for them and me would be greatly appreciated BTW.


I also have never had a great relationship with the parent. I had an abusive dysfuntional childhood and have not had a great deal to do with the parent as an adult. So I dont feel a lot of motivation to be there for them now. More guilt.


I dont enjoy visiting and there is no form of parental bonding at all. The main reason I go is to check that my parent is being looked after and also to be another presence to be seen in the facility by the staff, which might act as another force to enusre that they are looked after.


The parent has a partner who visits a lot and has a lot of other family who visit at least. Just not me. The partner and all the other family do not have any of the work pressure, health problem and financial strain that I do and live nearby with vehicles so its just so much easier for them,


So I am not sure what I am seeking here. Whether I am seeking advice or just wanting to dump something down somewhere anonymous and see what comes of it.


I will try and go and visit next weekend I think. I am taking a couple of days leave from my full time job so that might give me some capacity and energy. But am feeling burnt out, thrashed and also guilty over my lack of visits.


I would be interested to hear from children of Alzheimer's parents how you cope with this sort of stuff.

I have a question. Why on earth are you guilty? You have an extremely full schedule and great difficulty in getting there. And there was no real warm loving relationship. And the mind is gone and the visits are not pleasant. You are exhausted and not happy. Please do NOT go - this is pulling you down and you don't deserve that. There is no recognition, no appreciation, no bonding, nothing. Do NOT waste your time. Instead do something that you enjoy and keeps your sanity and your health.
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Reply to Lockett2166
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Instead see yourself as a volunteer going to
visit sick children.

How would you visit a sick child of a friend?

You enter the door bright, cheerful, happy to
see them.
Cheerful, take gifts, snacks, favorite things,
make light small talk about anything.
Take anything familiar.
Turn the TV or radio to something familiar.
Take a favorite food or snack. flowers (for color and scent).
If they are food oriented, take a supply of their favorites
to have when you are not there. Art oriented - a calendar
of their favorite artists, or outdoor scenery or pets or
hobbies.

Think of what you would do when visiting a
sick child about 2, 4, 6 years old. How do you
fill the visit? How do you make it pleasant, even
enjoyable for both of you.
Visit from love, not from duty.
Duty makes it hard
Love makes it fulfilling - for you, and you need that

Simple basic pleasures are what they need.

I used to go visit an elderly neighbor that had no
children, only a nephew that moved her to facility.
I would go once or twice a week (I did not have
the commute that you face to make your journey)
She could be angry and difficult.
I would go and rub lotion on her arms for her,
clip her fingernails (most facilities aren't allowed
to clip), one time I started brushing her hair, she practically
purred like a kitten. Brushing her hair became part of our
routine.
I knew she liked tastycake cupcakes, I would take her a
package. (later on I began taking her a box of them so
she could have snacks in her room all week).
These simple things comforted her.
She was not a relative, but she was a lonely human being.

So see yourself as a volunteer going to help someone
in need.
That will remove your emotional connections with
the toxic parent.
Perhaps put a different light on it and make it more
bearable for you.

Can anyone maybe give you a ride, one or both ways?
Is there an uber or lyft option that might be affordable.
Would an occasional one day car rental be worth it?
Some places have the $19.99 a day rental on weekends.
Then you save a lot of time, and can use the car for other
errands if you need to.

People seldom regret doing the compassionate thing.
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Reply to smithsilver2
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You have a lot to deal with. Maybe just decide what you can reasonably do and stick to a schedule. Like once every 3 months. May take a little time to adjust but hopefully you won’t worry about it as much if you have a solid plan. Easier said then done I realize. I’m working on cutting down on phone calls with parents. Much easier than your issues but I want to start managing expectations and boundaries now. Good luck and take care of yourself.
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Reply to Kmjfree
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I personally spent lots of time with my dad his last couple of months, almost daily and I dont regret it. The big BUT here is I didnt have the huge demands on your time, resources, finances and health you have

You have to watch our for your own well being and that is nothing to feel guilty about.
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Reply to Karsten
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Imho, you are asking more of yourself than you're physically able to accomplish. You're a superstar thus far! But you're going to have to give yourself a pause, else you fall faint. I am not a child of an Alzheimer's patient, but I am an in law of one as my sister in law has the horrible disease. I have treated my relative with dignity, of course.
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Reply to Llamalover47
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When anyone is in a position where you are now...choices have to be made. What we do initially and what we continue to do and what we are planning on doing may change - just as the weather.

Our children have had no dealings with us once they were told their Dad has had dementia for 9 years. That was 3 years ago and we see one adult child and family once a year at Christmas. That leaves two siblings and three of our grandchildren we don't hear from.

At first I was really upset but then I realized that they cannot come to terms with the illness. Two of our children have let us know prior to his diagnosis that they "Wouldn't be there for us when we got older." So, in one way we were prepared but the vacuum in our lives is painful....however, we just keep on living life and trusting our lives to God.

One adult child (age 52, the youngest) has gotten back into touch with us via text. Once I told them we were okay with their feelings, things got back to their communicating with us. They live too far away now but it was like getting a drink of cold water when you were suffering from heat exhaustion.

Their Dad is getting worse - he doesn't understand where his children and grandchildren are. He will sometimes remember them fondly. So when one adult child sent us a simple card and phone call have meant a lot to us. I comfort him by reminding him of all the good times etc. and how much he is loved.

We know not everyone can be a caregiver and not everyone is equipped to handle these difficult situations. I just wonder if you could just find a way to communicate that you love them and appreciate things that you remember through your life.

Give what you can - accept your limitations - and know that this disease is too difficult for everyone. Maybe you can be a part of fundraising or making others aware of Alzheimer's and dementia. Later in life you might be instrumental in helping someone who is going through these difficult diseases.

Please know that there are so many of us out here in this most difficult time. Life is precious - so fill your heart with smiles and hugs. For everyone reading this post - don't let this disease rob you of joy in your heart . I know there are days I might not feel like it. I take a few quiet moments to remember all the wonderful memories made. I trust those memories will carry me through as I seek wisdom and guidance taking care of my spouse.

Our happiness should never be dependent upon someone else. We have had to deal with an adult child with psychiatric problems. While we had to learn how to deal with their behavior - we did have to realize that many times you are not part of the solution. Even today we would never confront them of past turmoils. We understand the problems of behavior the psychiatric disease causes.

I trust you will soon know what is the best course of action. I like to make me a cup of Tension Tamer Tea - drink it slowly, breath in and out relaxing myself.
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Reply to LNReason
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I like what Harpcat said—you can’t feel guilt unless you’ve done something wrong. My mother and I have never had a close relationship, but I was her caregiver when she was living alone and developing dementia. I researched and chose her assisted living home. During the last few months of the transition from her home to AL, she was openly hostile toward me and often accused me of things I hadn’t done, like abuse and stealing. She would get very angry and agitated just at the sight of me.
As a result, there was a period of a few weeks when I didn’t visit her at all. I communicated to the staff about how she was doing and whether she needed anything, but had no direct contact with her. We did have other relatives who visited her in that time.
When I did visit, one of the caregivers commented that she hadn’t seen me before (she sounded a little judgmental about it) and I had no problem telling her that our relationship was difficult and it seemed like she would rather not see me, so I stayed away. No guilt because I know I did my best. I made sure she was cared for and had what she needed. You’re allowed to feel this way too.
Now we FaceTime once a week due to Covid, and we keep the visit as long or as short as is comfortable for both of us. Yesterday she was agitated and rude to both me and the caregiver with her, so I said, shut it down, we’ll try next week.
It’s ok to take into consideration your own schedule, your own travel difficulties, your own energy level, and the relationship you had before the dementia. Please take comfort in the fact that you are doing enough by checking in with her facility, and she gets plenty of other visitors who can do so. You have everything covered, so visit when you can without guilt. Hugs to you.
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Reply to Doggomom
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You are doing enough just by being there. That alone says a lot. To pass the time turn the t.v. on whether they are watching it or not. And if they aren't saying anything to you and just sitting there that's okay too. Those are the most important times because their time is nearing and that's when you really need to be around more often than usual. Their eating will eventually come to a stop as well. I know first hand. My husbands mother had it and I witnessed so much and since my grandmother has the same thing I am more aware of the necessary things to keep my eyes open to and what to expect.
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Reply to mblack
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My goodness it sounds like you already have more than enough to take care of. Try and not feel guilty. The situation is what it is. If they seem to be doing well I would only go when you are feeling up to it! It sounds like a full day just to get to them. Try and take care of yourself and your health. YOU are important.
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Reply to Texasgal
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My parents didn't have Alzheimer's but eventually developed other forms of dementia, although not as severe as what you're describing.

Considering the various adversities you are facing with your loss of time working, difficulty in traveling, your own health issues, and then what you face when you manage to visit (and then knowing others who can conveniently do so), I would probably feel more guilty ABOUT going than about NOT going!
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Reply to jacobsonbob
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In an ideal world, you might visit more often. The world is not ideal and you have a lot of constraints. What would be a good visit schedule that allows you time to recuperate for all the tasks you need to accomplish - every 2 weeks, monthly, quarterly...? Do what works for you and focus on making the visit enjoyable when you are there. Bring a favorite treat. Color in adult coloring books together. Play music your parent enjoys. Anything that is small, easy to carry on public transportation, and makes good memories. Yes, the disease is progressive and that is why he/she is in this facility. Use the moment to create joy for yourself and him/her. Don't let this situation rob you of peace of mind.
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Reply to Taarna
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You can’t feel guilt unless you’ve done something wrong. From what you've written you’ve done nothing wrong. What I think is, you are placing societal expectations on yourself and owning them. Your life sounds very busy and I can understand why a visit to this person/biological parent who was abusive is not pleasant even besides the fact that they have ALZ. You say others visit and that they too can see if she is cared for. So I think you can let that obligation go. They are as capable to notice it as are you. There are no hard and fast rules on how often to visit unless you want to set those rules. You can call the nurse in charge and get reports. Go only if you feel you really need to not because of what you feel others "might" expect. During these later stages of dementia, it is never pleasant nor easy to visit. Do what your health, both mental and physical allows you to do.
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Reply to Harpcat
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My mother has advanced dementia and is in a memory care unit. She is not communicative. She can't do anything for herself. I do all of the talking, sometimes I sing to her or read to her. Before coronavirus, I visited her every week. I have not been able to visit her since March. They are finally allowing family visits, once every 2 weeks, by appointment for 45 minutes. But during this time when I couldn't visit I realized that she is doing fine without me, so really the choice is mine whether to visit or now. What kind of a person do I want to be? Can I live with myself if I don't visit, at least to make sure that she is being well cared for? You have your own difficulties. Don't feel guilty if you cannot do more. Do what you can.
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Reply to NYCdaughter
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I have had too much time with my aging parents at their own home with caregivers. During early covid I took a time out from my parents-I enjoyed my time off, cleaning my house and doing some unfinished projects-i did not feel guilty at all. I put in a lot of time with them to this point dr. visits, hospital etc. 3-4 hours a week. Did their taxes this year took forever digging up the needed papers. I needed a break and covid gave me the time for it. My dad has dementia and loads of other problems mom is in control of their life and tells dad and anyone else in the room what to do and when. Grand daughter-of lazy brother-was doing bills for pay. GD stopped doing cuz of covid and expecting baby. Bills handed to lazy brother -for pay I'm sure. and he complained so much about the 5 minute drive to their house-mom asked me to do. I had to take the job because mom would have done something really bad-ask the yard guy or housekeeper to do their bills-Parent money is none of their business. Housekeeper and yard guy already get paid a ridiculous amount for doing a few hours of real work each week. I discovered bills unpaid, over paid, missing SS money, adding up to a big chunk while GD was doing the bills. Lazy brother would have never figured this out in the first place. I do what i have to do-not because I want to. I have done about 100 hours of help since the first of june. There is one other responsible sibling that lives out of state cant help me with any of this in my state.
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Reply to medicaidmaze20
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As with many others, visiting anyone in a facility has been restricted/eliminated. Mom's facility went into lock down March 16, so I haven't been able to visit with her since then. They recently have allowed outdoor visits, but it requires wearing a mask and staying 6' or more apart. I have no issue with either restriction, however mom's hearing is virtually non-existent and she tends to just repeat herself. The hearing issue makes it hard to redirect/refocus her. Unless they could provide a white board or easel/paper that I could write on, of what use would my visit be? Previously I was using a Boogie Board (hand held LCD screen that can be written on with stylus and erased), but that requires closer contact, so that won't work. Stinks because her b'day is next week! I do hope to go, even if just to bring cake or cupcake, maybe ice cream, a card and some little gift.

Although I have 2 brothers, I was really the only one visiting mom. Everyone in her generation is gone, and her friends, if still alive, are too far away and/or too old to visit, so I was it! I go because I'm really all she has now... We didn't have the best relationship, but it wasn't really horrible either. Although it would be nice to at least see her to know she's doing ok (no access to her window), even just once/mo, I do get a little sense of relief in "duty" because of the lock down, although I still have to get and deliver various items she needs and pay the "rent". (all done outside)

If your guilt is being driven by others, or what you think the others might think or feel, try to let that go. Caring for and/or visiting someone should be what YOU feel you need to do, NOT what anyone else thinks you should be doing. It is NONE of their business how you run your life or relationships. NONE.

If some of your guilt is your own, decide on the frequency of visits that would assuage that guilt. Once/month? Once every other month? Keep the visit to a minimum - whatever works for you. Given the parent's current condition, it isn't like they are going to berate you or guilt you. It is very hard to see anyone who goes down this path and becomes mostly unresponsive, and incapable of communicating or even recognizing us. I am hopeful that mom hasn't forgotten me yet... She did stop asking me about my brothers some many months ago, as they were not visiting - out of sight, out of mind....

Set balance in your life. Don't feel you need to do anything to make others 'happy". Most likely whether you went every day or once/year they would still find something to complain about . It is your life, not theirs. Go with what works for YOU!
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Reply to disgustedtoo
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If other members of the family are visiting, the facility is ‘being watched’ by them, and your extra visit isn’t crucial. No need for ‘guilt’ about stopping for that reason.

After ‘an abusive dysfunctional childhood’ you ‘don’t feel a lot of motivation to be there for them now. More guilt’. Why guilt for feeling that way? Are you supposed to whip up motivation out of nowhere? You clearly have had enough motivation to put yourself to a lot of trouble, even though it’s been 'uncomfortable and unpleasant’. There comes a time to say ‘stop’. Or ‘less’.

An alternative might be to contact the partner who visits, or one of the other family members if that might work better, and tell them how grateful you are for their visits. Say that Covid is making things in general increasingly difficult for you, you are worried about risks in taking public transport to visit and perhaps conveying the infection, and you need to drop your visits down. Ask if they could send you a quick update email about their own visits, and if they could tell your parent that they keep you informed. Perhaps you could also let the facility know that you will need to drop down your visits (once in three months?), but would be glad to get any reports from them.

I did visit my first MIL for a long time when the visits weren’t great, but I did love her very much and I believed that she knew and appreciated my presence. No dementia, but I know what you mean about questioning the value of the visit. No matter what you do, it isn't going to be great.

Let yourself off the hook! At least for now when your life is so complex. Best wishes, Margaret
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Reply to MargaretMcKen
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Anyonymous, You do what you feel is best. Do not let others bully or guilt you into doing something you really do not want to do. It is really none of their business, but yours! You should not feel guilty at all. Your parent seems to have enough family visiting. I do not blame you one bit for not visiting often. I think you are amazing that you care enough to make sure parent is getting good care. No guilt here, my dear. Suggestion: How about taking parent outside near shady trees and flowers, you really do not have to talk too much, just being there , silent in nature, makes for calm and peaceful interactions. In my area facilities are staring to open up, be careful, both wear masks, hand washing before and after visiting parent. Have a picnic, buy food at a local restaurant. These are just a few things to make the visit a more pleasant experience. Good luck!
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Reply to earlybird
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Dear Anyonymous1,

It sounds like you have been able to take some time to figure out where the guilt is stemming from and acknowledging some of it is indeed internal which probably goes way back into your childhood. The other is about being judged by the other family members and partner. You are absolutely right in the fact they don't really understand or appreciate your circumstances and in your words "have a value pretty close to zero" for you. That being said, try not to force any of your life decisions based on "what they think" or "what YOU think they think" as we truly can never get inside anyone's thoughts.

I hear you and understand you - I've actually gone to battle with two of my mom's five siblings - there was no reasoning with them or understanding from their side at all. No apologies for how they hurt me AND I haven't heard from either one of them ever since. I will no longer be ruled by their judgements and I no longer worry about them at all since I no longer have contact with them. Occasionally, I will create an "Update Letter" and I just mail those to each of her siblings - no phone calls. Your an adult with your own mind, please don't waste your time even if they are family trying and trying and trying to make them happy with what you do with your life and how you decide to spend the little spare time you have. In my case I feel like I wasted a good part of my life trying to have a relationship with my extended family only to come to this point where they don't have any compassion, understanding or empathy - that lies with them, not me as I have gone out of my way to discuss the issue, keep them informed, sent pictures of my mom, take care of their sister to the best of my ability with my husband's help etc. and all I get in return is what I call "radio silence".

Keep your head held high and know that you do have VALUE - don't let anyone take that away from you! Sometimes in life, we have to give to ourselves what others won't. Take care and just keep putting one foot in front of the other!
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Reply to NobodyGetsIt
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Here in NJ they are allowing outside visits. For me though, the Townships with the highest numbers are the ones with Nursing Homes. I have a friend who would love a visit but at 70 I am not taking that chance. So far so good.

Yes, better that you don't worry about what others think. You take care of you. If your health problem is an immune one (even if not), you should not be entering a facility at all. You are too susceptible to the Virus. This is not an excuse but a fact. Just reading what you need to do daily and to see Mom tires me out. It would be one thing if she knew you and could hold a conversation but she can't. And you are running yourself ragged and its probably effecting your health for someone who can't appreciate the effort. She has a partner so there is someone there for her. Its understandable if you have never had a relationship having one now will not make a difference.

So stop feeling guilty. (I know not easy) Its time to care for yourself. You need whatever time you have to yourself to care for yourself.
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Reply to JoAnn29
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Where do you live that still allows visiting in long term care facilities? I just read around here that Canada was allowing some visiting recently, but I’m not sure of that. Regardless, due to covid, I’ll evaluate the risks of visiting due to covid.

I have not been able to visit my LO in MC due to a ban on visitation, due to covid, except in end of life situations. I call the facility, send my love, etc. My LO isn’t aware of her surroundings. Still, I’m going to inquire about visiting through a window. If you don’t care to visit, then, just send cards, treats, make calls, etc. It’s a difficult thing to see a LO in their condition. Some people find this too difficult. Don’t be so hard on yourself. Plus, it’s risky going into long term care facilities, due to covid.
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Reply to Sunnygirl1
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Dear Anonymous1,

You are putting a lot of pressure on yourself to do more than you are capable of doing. I do wonder though how you would even be able to visit due to the pandemic. I haven't seen my mom in person since March 13th because of COVID.

As I see it, your plate is not only full it's overflowing. You have a lot of very legitimate reasons for not visiting your parent. You have two jobs, health issues, no transportation (other than public) and the facility is far away. Not only that, you don't have a good relationship with your parent due to an abusive childhood and you don't enjoy the visits. Your main reasons for going is to check on them and so the staff is aware of your presence - I think that is what your role is. Leave the visiting to your parent's partner and their family and be glad they can provide what you are unable to.

You need whatever time you do get, away from all the other pressures to refuel as you are running on empty! You are in a vicious cycle that will continue if you don't start taking care of yourself. As they always say "you can't be a good caregiver, if you aren't able to take care of yourself first".

I am an only child who will be turning 58 in a couple of months. I placed my mom in an AL facility in 2015. She is now 95 with moderate - advanced Alzheimer's and is in a new facility in their memory care wing with hospice as she nearly died in April due to severe dehydration and contracting COVID. Her five remaining siblings all live in other states and aren't involved so I'm it along with my husband. My husband did take a six-week leave of absence from his job to help me when she was in the hospital and look for a new place to move her to. Now that he's back to working, I'm the one that does all the "window visits". I'm tired and burned out too and I wish I had someone else that would visit her but, I don't. I don't always enjoy my visits either, I just do the best I can and hope the next visit will be better and some visits are better than others - this is a rollercoaster ride with ups and downs and many twists and turns.

There are a lot of us who can always find something to feel "guilty" about no matter how much we do or don't do - that is something within "us". I bet if you were able to do more, you'd still feel guilty so I think you need to explore why that is.

You said you don't know what you're seeking here - I think you are looking for validation telling you it's "ok" that you're not able to visit because of your own responsibilities just in order to survive. I think I've done just that. I wish you the best in coming to terms with the situation that is causing you so much angst.
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Reply to NobodyGetsIt
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Anyonymous1 Jul 26, 2020
Thanks NobodygetsIt so much for taking the time to write a considered response. Very kind of you.

The guilt is probably two things. One being an internal thing, As I think about it also probably about being judged by the other family, especially the partner, for not going more often. But they dont really understand or appreciate my circumstances and TBH have a value pretty close to zero for me. They have never been, nor will ever be, there for me at any time in my life. So probably best I not think about their opinions.
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