Normal to feel disconnected yet connected to a loved one?

Maggie092

Hi, 

It's been awhile since I was on this support message board. How is everyone? I am fine, just graduated from Miami Dade College with a Bachelor's degree in filmmaking. I am still working 2 jobs, hope to minimize yet be happy with one or even two jobs that are fulfilling mentally and financially. Anyway, the topic is it normal to feel disconnected yet connected to a loved one, and in which my case is a tough one. I have a mother that is already 6 years (or more, depending it occurred before professional diagnosis) in since her diagnosis, 2 years since being in an ALF, and it has been difficult for me to say that I haven't visited nor contacted since my last visit, which was around Sept. of 2020. Now, I know that's insane to even be this long in not going to visit or make the time to call, well, I am for one scared to death to even try communicating. I mean, she has been my only parent since my father's passing in 1999 (which doctors thought most likely illness came into the foreground of my mother's brain, not sure). I don't know why, but I feel like I am self-sabotaging myself, especially if not knowing my mother my still remember me. I also want to know, if anyone may/may not know, if these ALF's are allowing maybe more than 2 people to visit someone there, because I need a whole village to be there for my emotions are not so good (I was almost kicked out that last time because I was bawling my emotions out). Anyway, sorry this is long, just haven't really had an outlet, except for Facebook, to let my worries and frustrations out, yet support in those that understand. I am doing all I can to avoid visiting, hence the disconnection, however any moment that can trigger, like Mother's day, I am immensely connected back to my mother. Now, is that normal to feel like that? And any advice to give to someone that has an emotional trigger to cry to avoid having that if I have to see my mother solo?

jmlarue

What your are experiencing is a profound sense of loss and grief. The emotions you are feeling are normal, but often overwhelmingly painful. You need to give yourself some time to come to grips with your grief, hopefully with the help of a professional grief counselor or a grief support group. Until you do, you are emotionally ill-equipped to visit your mother. You risk causing irreparable trauma for both your mother and yourself if you should visit and lose control over your emotions. Neither one of you deserves that sort of pain. The Alzheimer's Association has a helpline for you to call to find connections to grief support groups or professional grief counselors. The phone # is: 800.272.3900. I hope you will take advantage of the advice.

"Grief surges - A grief surge is a sudden feeling of being overwhelmed, a literal hit of grief. This sudden jolt of grief seems to come out of nowhere and strikes frightening deep pain at all levels. Something as simple as a sound, smell, picture, or phrase can bring on a grief surge. Anniversaries, holidays, birthdays etc can also trigger grief surges. 

What helps When you experience a grief surge, try not to panic, acknowledge your feelings, seek support and know that this will pass. It is a normal, though at times difficult part of the grieving process."

(From Alzheimer's Society of Ireland)

Lindsay22

Hi Maggie! I understand how you feel. It is very difficult for me to visit my mom.  She is in the later stages so there isn't any conversation or real visiting, it's more of a "wellness check" and I usually leave in tears or very close.  Honestly at this point the visiting is to soothe my own guilt because when I don't go I feel worse.  There's no winning. First, I would suggest you get a good sense of how she is now since you haven't seen her for awhile.  Is there someone who is seeing her regularly who you could talk with? If not call and speak with one of her main caregivers. Is there a better time of day to visit (likely morning)? What is the schedule of meals? Sometimes coming during a meal while she is occupied can be easier. 

While I agree with the pp that you could certainly benefit from counseling that can be a long process and the longer you go without seeing her the worse your guilt/reactions/emotional breakdowns may be.  I suggest you pick a date, pick your person who will go with you and hold yourself to it.  Plan to stay for a very short time (sometimes I am with my mom for less than half an hour) and focus your energy in just getting in and getting out without a big emotional incident.  Sometimes I just leave "bye mom, see you soon, love you" and out the door I dash. Then you can cry in the car. 

I think you will feel better after you go and counseling/talking to someone may be more effective. 

Quilting brings calm

I’ve been trying to figure out how to respond to you since last night.  It’s hard for me because I’m the one that’s here.  I’m the one that is visiting my parents in the assisted  living facility  and dealing with their needs. They have been there for over 2.5 years, including through the covid visiting restrictions that lasted for a full year.  My thoughts on the matter come from that perspective   My full siblings are out of state and do not call or visit her.  My step- siblings are local and are currently not visiting or calling. None of them are helping me in any way either. 

You didn’t say who IS visiting her, who is handling all her outside needs.   Is one of your siblings, her siblings, etc doing it?  Could they use more support from you?  

You are not alone in finding it difficult to visit or call.  Many people have said their siblings find it hard to see their parents with dementia. I find it hard to do also.  My visits are short and once a week or less, unless things come up to make it more often.  Doctor visits, supply runs, checks that need signed etc.  Phone calls are difficult - repeated conversations, trying to calm mom’s anxiety.  

If your mom is still in assisted living, then she most likely still lives in our  reality.  She most likely still remembers you and knows she hasn’t heard from you.   She may not be able to remember just how long/recent  it has been since she last saw you though.  My mom often forgets what happened shortly after it happens.  

I would suggest a short visit - 20 minutes or so.  Take the person she sees most often with you.  This person  can help guide and redirect the conversation when it becomes difficult for either you or your mom,  Take a dessert ( coffee cake, pie, etc) and drinks ( tea, coffee) so that you all have something to focus on besides just staring at each other.  Break the ice after which you  can continue with phone calls after that.  

Be prepared for that first conversation to be all about her and to be repetitive.  She may be interested in your education news and  your jobs, or she may not.  Their brains work( ie not) in mysterious pathways.  It’s hard to figure out how they landed on point B from point A. 

Edited to add:  in full disclosure, I took the months of December thru February off from visiting and limited my visits in March and April. Due to an injury.  So there are times when even those of us who are regularly visiting don’t or can’t.    I will admit that even though I was in physical pain and depressed  about  that, the mental and emotional relief of not visiting was immediate.  

SusanB-dil

Maggie - congratulations on your degree.

I can relate a bit to connected/not connected.  My mom and I were never close, but also around holidays or even birthdays, I find I do miss the family being together.

Some great advice already posted... and QuiltingBC, I love that idea of bringing treats, tea, etc when I do (finally) go see mom at her new place.  She does call me more now than she ever did before.  (albeit it is the same conversation over and over, like on a loop)  On a flip side, she thinks I've already been there. 

Babilv

 I can relate to you being both connected and disconnected as the LO with dementia is in a new stage of life that is not something you may not have experienced, and, they haven’t either. 

Even though your mom has dementia it doesn’t mean she won’t recognize or remember you, what I suggest is that when you visit or speak with her, you come prepared with shared memories/stories (funny or especially sweet) that you can share with her. Also, great advice has been shared about bringing a treat, I suggest that the treat you bring be one of her favorites or possibly something she or her family would make for special occasions. 

Sharing these things may help you to keep your ‘sad’ emotions in check and bring your ‘happy’ emotions out. 

If you feel your emotions welling, it is ok to step out for a bit, you could say your need to speak with the staff or have to make a call.

Reach out to your siblings, share your fun visit with her, stories you discussed, things you are, they might just need to hear that in order to call or visit her. Keep engaging her for yourself.

abc123

Hi Maggie, Congratulations on your degree! That's great!

I think it's very normal to feel disconnected and connected at the same time! You are only human and this disease is extremely hard on everyone. The thing that helps me the most is my faith and I pray a lot! Some days I pray all day long. I have to remind myself that even though my mother is bedridden and hardly speaks at all, she is still a person. There is a reason that she is still here. I have to remind myself that she is still important. Yes, I love her very much but it's still very hard. I understand how you feel. You will find you way. Go easy on yourself. 

May flowers

To piggyback on abc’s post… last night I was watching an episode of BlueBloods and the grandfather on the show was worried about getting dementia because many of his friends had it and his grandson asked what his fear was. The grandfather said it was that he would not recognize his family. His grandson replied, it doesn’t matter if you know me, because I know you. It isn’t easy on any of us to see our LOs like this. I don’t think those of us who face the battle daily are not made any differently, we have just made a choice - our LOs deserve our time, love and respect because of who they are, not the person dementia has turned them into. Whether that means visiting once a year, a month, a week, or caring full time, it is about doing what you can do. 

The one positive about dementia is there is no sense of time so your LO may not know it’s been x amount of time since you visited last, so I would try to set aside that feeling of guilt.

My FIL lives with us but does not know who I am, or who my husband is. Taking care of him can be so difficult at times, because to him I am a stranger. But I don’t do it because it makes me feel good, I do it because he was an incredible father and husband and deserves my love, even if it is 100% one-way. That’s how I am able to keep trucking on anyway. If I  was hoping for any kind of reward in this lifetime, I’d have burnt out long ago. I try to see the reward in the giving of love, not receiving. 

ReallyScaredSon

I just wanted to add, I think it would be abnormal not to have conflicting emotions when a loved one has dementia.  The PWD is increasingly living in a reality that is unlike anyone else's.  We, as humans, build connections through shared experiences and shared time together.  Increasingly, a PWD is less capable of sharing experiences with anyone.  And even if you're in the same place at the same time as a PWD, their perception of things is likely very different than yours.  For the PWD, their life is changing, they have no control over those changes, and with each day, they lose some ability to understand those changes.  It's hard on the PWD and all her friends and family.  It's an absolutely terrible, miserable condition.

So yes, I think it's absolutely normal to feel disconnected and connected at the same time.  Along with a boatload of other powerful emotions which may also seem self-contradictory.

Never beat yourself for how you feel.  How you feel is how you feel.  All we can do is acknowledge our feelings, try to understand them, come to grips with them, and continue to look for happiness in the world.  Easier said than done of course!

My mom is affected with dementia, and of course I love my mother.  Even though she is still alive, I've been grieving her loss since I came to know of her condition.  I feel connected to her for obvious reasons - she gave me life, and continued to love and care for me.  But I feel disconnected because it's increasingly hard to have any kind of meaningful relationship with her, due to her cognitive decline.

AyaanWhitney

Hi,

Conglatulations with your degree! 

To have such feelings and emotions are normal. You shouldn't blame youeself for that. I agree with other, who advice to talk to somebody, who visits her. Or to call to know how the situation is now. It will obviously make you feel a little bit better. After that you will try to understand can you emotionally stand the meeting face to face. Everything will be ok. Do not push yourself.

May flowers

My thoughts..l

I agree that people become connected through shared experiences, and I believe that with our  LOs, there are years or a lifetime of shared experiences and relationship to draw on, even when now you don’t feel close. 

There are many types of love, for example, one is the touchy-feely love and the other is the deep, lasting love that seeks to give even when there is nothing in return. That love holds many marriages and families together through tough times as well. Maybe this is where faith comes into play because I can accept the lack of reciprocation (not saying it’s easy, just bearable) because I believe in the big picture my efforts will be rewarded. It is also a way to show love to my DH, and keeping a promise I made to my MIL.

I was not even that close to my FIL, but the love I have for him comes from my respect for him for being a great father and husband. That’s my connection, I don’t draw from who he is now, because this is just his body and broken brain, not what makes him, him. When my mom had ALS, I drew on that past relationship even though she could not communicate for the months leading up to her death. 

It is VERY hard, but I think what makes it harder for some are hopes for relationship when the LO is no longer capable. Or guilt when the situation is out of our hands. 

When my FIL is kicking me while I am changing his diaper and calling me horrible names, and I’m ready to throw in the towel, I keep coming back to who it is I am taking care of, the man who gave so much to his family. The personality and mental ability of that man may be gone but his legacy remains and he deserves dignity and respect. So I walk away, take a deep breath, and try again. Or when he was in MC, and visit after visit, he had no idea who I was, I kept going back.

It won’t make him better, it won’t solve any problems, it won’t restart a relationship, but that’s not my goal. It is about honoring his life and positive contribution to this world by ensuring he is not forgotten, he is safe and cared for - it’s just a different kind of connection.