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.
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
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!
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!
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.
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.
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.
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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