Severe dementia and clinically blind; is it typical for family to distance themselves?

What kind of relationship did your wife's family have with her before she took ill?

I do NOT think it is normal human behavior to distance yourself from someone you love, when they become ill.

However, I do think it is normal protective behavior for a person to distance themselves from someone with whom they have had a difficult unloving relationship.

I think this is very common behavior. And all those excuses, like "it's so hard to see them like that"? Well, what do they think it's like for us?
For a while it helped when I realized it wasn't just our two families that were behaving like this. But then my poor husband, who was still pretty aware at the time, said, "I guess to them I'm already dead". That's when my patience ended with both families. Anyone who makes my husband feel like that... And what can you possibly reply to that? Both of us knew it was true.

You have my sympathy and I hope that you are getting respite from caregiving on a regular basis. You are not alone, and there are resources available to caregivers and their loved ones through local departments on aging.

I do think distancing is typical and a normal instinct for people who are not "built" for caregiving. It also happens to families who have children with severe deficits, couples undergoing separation or divorce, and probably in many other situations.

I don't know if it's instinct but it is common. My mother had three granddaughters who she essentially raised (my sister died relatively young) and after she started slipping they just stopped visiting her even though they all lived nearby. Despite her dementia she did notice and, sadly, convinced herself it was because she no longer could provide them with money, which just as sadly was probably at least part of the reason.

50sChild, we all have lives that may not revolve around our aging loved ones; many of us have good reasons, practical or relational, for managing our aging loved ones’ situation from afar, or for limiting our visits. My comment was not for those with good reasons (that may or may not be obvious to strangers). Rather, my comment was a direct response to the post about relations pulling away once an elder had dementia, especially when the pullers-away leave a sibling to do the “heavy lifting”

Yes, it happens in a lot of families.

Nobody want's to get Involved with other's problems
-  You'll now see who's - who .

Sorry for what you are going through. I went through a similar situation. When I had to place Mom in a nursing facility, I visited her but not as often as I liked because I had other issues like my Mom's property and other assets that had to be sold plus maintain my job so I could pay my bills. As a result I got ill quite a few times and had to be hospitalized. I even lost my job. To answer your question about is it human instinct to do it? My Mom deteriorated fast, lost her hearing and her sight. In Spite of all this, when I did visit she sensed I was there and when she stopped eating, I came by she went peacefully. Yes it is possible for family to distant themselves although it was not my intention to do that but I was the only child and I had full responsibility to make sure she was cared for and was trying to hold down a full-time job. For me it was not easy to see my Mom this way. This could be a possible reason too. The only peace I had was she was in excellent care and they kept in touch with me.

Some people have legitimate reasons for not being there and sometimes I don't blame them. I spent two hours with my father yesterday and every minute I was there was pure torture. He is angry and feels sorry for himself. He refuses to accept his situation. He has been abusive for years and treats me poorly despite the fact his sons neglected him years ago. Nothing I ever do pleases him. Yet my brothers are heroes in his eyes. I wanted to walk out the door and leave him there. He didn't take care of me, my mother did all the work. Not everybody has golden moments or great parents.

I remember I used to sit and talk to my Mother for hours and hold her hand. Sometimes she would look up at me and smile or she would squeeze my hand. So they know. Human communication and contact is so important, especially family.

This is one of the most helpful threads. thank you all for sharing your stories and thoughts on this topic.

I think it is quite common. Not everyone has the mental and emotional fortitude it takes to spend time with someone who can’t interact, and who are clearly not the person they were before becoming ill. In the case of dementia patients, I don’t think they really notice there’s a lack of visitation, but for their care givers, it’s very obvious.

My husband was in a nursing home with severe dementia for nearly a year before he died, and no one but our kids and I visited him. He was in a facility far from home, but we made sure we there at least weekly, and most of the time, more often. It made me sad that it seemed no one else cared enough about him to visit, but I realized they just didn’t know what to say and it was hard to do. When it’s hard, people just put it off, and probably never make a conscious decision about it, they just avoid it. We all noticed that it seemed like the other patients rarely had visitors, so I think it is pretty common.

I still am a little sad about it, but honestly, it wouldn’t have made his life any better. Dementia is just sad in general, and there’s not a lot that can be done to change that. Deciding not to be mad was easier on me.

Wow! Every time I read a responses on here I am just stunned by the compassion from those of you who understand the failings of human beings and still stay loving, even offering family members kindness. Your wisdom shines like a light. Your words are like poetry and offer much relief, I'm sure, to others.

My brother who ignored my parents for years has just finished a single year of caregiving and announced that he is done doing it. He is planning to move out of state and I will be the only one to watch over both my parents who need help. I know he is running away. My other brother ran away a couple of years ago. Neither one wants to see them decline and are too selfish to help. If I get one more email that says, we are so far away, but we sure wish we could help.

I have no better answer, but I think the response below is accurate and well said. (One of many.)

"One thing you have to focus on is yourself.. and try to avoid getting stuck in the anger, resentment rut. (this happened to me).. you cannot make people care or do the right thing and anger and resentment will only hurt you.. try to remember that... I know it is hard.

I wish people were more empathetic and cared.. I don't know what it is but dealing with my parent's dementia has really changed the way I look at family in particular."

Hugs to you.

I'm afraid it's very common, or seems to be. They will have lots of reasons which will range from sound to self-pitying and despicable, but even the comparatively good reasons won't help you or help your sadness that she is being politely forgotten about.

As it's your children (your own too or just your wife's?) that you mean, I do urge you to be frank about what you would like from them. People are more likely to do things if you give them specific invitations - let's not say instructions - than if you leave it to them to volunteer.

It isn't only Alzheimer's patients; my MIL was dying of cancer at our home for about a year, and most of her adult children didn't visit because they "couldn't handle" seeing her decline. She was totally "with it" mentally, so they didn't have that excuse. I remember telling my SIL's to remember that it's good for our kids to see help us take care of Granny, because someday we will be Granny. My kids did help, and they were good help. One other SIL (another daughter-in-law did have her for her last few weeks, and her kids also helped with small things.) But most of the rest were rarely around.

When my husband had dementia and later, when he died, relatives and friends vanished by the droves. I also felt very resentful and hurt; what you're facing is difficult enough and it is made more difficult by those who seem indifferent or uncaring. I have found it helpful (and healing) to write and publish about various aspects of this (like when I got rejected from a grief group!) but it's true that ultimately the resentment hurts you more than those you are resentful towards. And there have been a few really wonderful friends and family who have stuck by my daughter and I. And you sure do appreciate those true friends.

Unfortunately from what I have experienced and what I have read on this forum.. it is typical for family and friends to distance themselves.

My parents both have dementia and pretty much all family has distanced themselves. My siblings dont call, visit, or even ask how they are doing.. both for my parents and me. The same goes for my mom's family who she has sisters that live here in town who act like she no longer exists.

This is very painful for me.. probably more painful for me then it is to them since they dont have the memory to remember when the last time they saw everyone.. so thankfully they do not completely feel the pain of their rejection and lack of love or support.

One thing you have to focus on is yourself.. and try to avoid getting stuck in the anger, resentment rut. (this happened to me).. you cannot make people care or do the right thing and anger and resentment will only hurt you.. try to remember that... I know it is hard.

I wish people were more empathetic and cared.. I don't know what it is but dealing with my parent's dementia has really changed the way I look at family in particular.

Try to look for a support group, post here.. try to find others who can be more supportive to your situation.

((hugs))

Thelmas, I have found this to be true also. Both parents are in severe decline. At first I was upset that my spouse would not even visit them. He asks how they are but he does not want to be around them--and we all live in the same house! He said that he does not like to be around old people. He says they make him feel old and sick. I have come to understand that some people just can't deal with it and so I don't judge. Yes, when people get old they may not hear well, see well, or communicate. People who once knew my parents just can't connect with them anymore for those reasons and there might well be other reasons too. I find it hard myself to talk to my father because he just talks gibberish. My mother is very hard of hearing and I have to say everything three or four times, which makes it very tiresome to hold a conversation. I have caregivers and I don't hear them talking to them either. The only thing we can do is be there and make sure that they are safe. I am sorry you are going through this. I have learned a lot about people through this lonely process and it makes me very sad. But each day in another day that we can do better than the day before.

It is NOT our human instinct to turn away, although unfortunately it IS a typical response.

Those who turn away may not understand that even thought your wife has severe dementia and is not connecting with memory, words or the ability to offer cultural substance to others, she DOES have 'awareness' and senses in the present moment...and still feels. This is something not too many people understand, as we judge others inability to communicate and participate as them 'not being there' at all.

My mother is 97 and 1/2. My husband and I have taken care of her for 10 years. She has ALZ and vascular dementia. She hears your voice and its intonations, she feels a loving touch on her skin and smiles, she sees in the moment and can tell you she likes your hairdoo or outfit color, she intuitively senses how you approach her and will respond in kind to that approach by either relaxing in the moment or contracting and disconnecting further from the person. She feels your energy and those of others, even though she may not recognize or know their names.

Most of us are not in-tune with the energetics of each other, although we intuitively sense when we feel comfortable or not with a person, even though we do not know them. Most of us are only aware of personality and cultural adaptations.

I find that when family judges a dementia patient and distance themselves from this type of situation, it is due to their own heart limitations and non-understanding of who we truly are as spirits living a human life. It is their loss and they are showing their own shortcomings. It is who they are and unless they change, you cannot change them.

You are lovingly offering your wife the energetic support that she needs right now. It is subtle, yet real. You are her connection to security and her own level of aliveness. To be a caregiver to a dementia person is not an easy role to live 24/7.

You have a great heart. Remember that when times get tough. Remember too to take inward-resting-breaks when you are able. Find ways to laugh out loud. [I have watched so many funny movies and learnt to make jokes too. :-) which I truly needed to do as I used to take things very seriously.]

My blessings and smiles go to you and your wife.

Thank you all for your input it helps, As I told the kids she cared for you growing up nursing you when you had the flu, mumps, sore throat, for eighteen yrs and this is the respect she gets .

Yes.  It is human instinct for people to distance themselves.  As others have stated, there are a plethora of reasons depending on the individual, obviously. 

I have some suggestions that might be helpful. 

One is to let the family members know that, although your wife may not be fully aware of their visit, you are.  Being her primary caregiver, it's probably uplifting for you to receive their visit too (I'm guessing??).

Another would be to invite family together to have a group function, maybe a pizza (delivered) lunch.   It's easier for people to be comfortable when they can share the visit with others.   

Also, and this will be more challenging since she is blind, to find some way/thing for wife and guest to participate in that creates a new experience for them, maybe some small crafting project with clay or play-do.  You could keep a collection of them to remember visits by, if it's fitting.

One of the last memories I have of one of my aunts, who had severe dementia and was only able to verbalize several words, was that we put 100-piece puzzles together.  She was still capable and loved doing them, and it's a memory that I will always cherish.

I hope that you will find a way to find peace with your family members.  Prayers for you and your wife.

I'm sorry for your frustration and pain. I think people avoid feeling helpless more than the person; it's not something that we routinely learn to cope with in our lives until something forces it. When my mother had hip replacement surgery years ago, my older brother came to visit her in the hospital one time and told me he just couldn't stand seeing her in pain.

Maybe when you next speak with them you could tell them how much YOU would enjoy a visit. I have found even when I couldn't help the person who was ill, being helpful to their caregiver made that helplessness easier to bear. Since I'm Southern, I often brought favorite foods along. Asking someone to pick up library books for you is a good way to give them a reason to come by at least every couple of weeks.

My experience with my Mom’s dementia was that once she didn’t know her friends and family very few came to see her. I think one of the other posters said it best - people are fearful, uncomfortable and their instinct is not to be involved. It’s a lonely journey caring for a loved one afflicted with this disease. May God bless you-as I often felt alone and overwhelmed. One of the the things that I always said was, “She May not know me, but I still know her. She is still in there and she will always be my Mom.”

You are giving your wife a wonderful gift, and are on your own journey together.

Different people have different abilities. In some, seeing illness or death, it triggers fear instead of compassion. Bringing the realization they are vulnerable also.

When my husband was ill people who I knew loved him stepped back. It made me sad until I realize that they just were not capable of more!

Sure it is. Because they don't want to help. They come by the droves when it comes to taking..but to actually help. Forget it. Family is worthless. In most case.
I care for my end-stage Alzheimer's mom and it's is extremely stressful for me and devastated my life..I have two brothers and I get no help from them.

I think it's sad that people would abandon their mother in a time like this. I think they need company, especially family, even if they don't appear to. Somehow they know.

I don’t have an answer for you but my sister did the same to our mother. She said that mom drives her crazy. My mother was also close to several of my cousins and they never call or come to see her. As long as she could go and do for herself they came around but when she was diagnosed with Alzheimer’s they all but a few disappeared.

I think it is because it can be hard to watch that person age into someone you dont recognize, or doesnt act the same as they once did. You might like to converse with them, but what if they cant? What if they act different, or are upset, argumentative, or unresponsive etc?
Nursing homes are full of people that dont get many visitors. Or not often. I think it isnt because people dont care. I think it is to shield themselves from the pain of knowing their loved one is not the same vibrant person they once were. And you are watching that person become a shell of who they once were.
I think it is extremly emotionally painful. Especially if they have dementia and they dont know who you are, or can no longer hold a conversation. You might be visiting someone who just sleeps around the clock. Do you stay for hours, or 5 minutes? How do you have a conversation with someone who cant? Im sure they could have a conversation with you, but that is also painful in a way. They probably feel guilty for not visiting more, not helping more, and seeing your pain with dealing with caretaking.

I think life is for the living and the elderly slowly withdrawl from the world and into their homes and then their room. And then into sleeping more and more. I think that happens for a reason. To disconnect them from the world slowly to get ready for the transition of death.
If you ever saw the dining room at the nursing home, the residents dont talk to each other very much. Hardly a word. Even the people who dont have dementia. They keep to themselves. It is the staff and families who do the talking. They answer, but dont usually initiate conversation. Or have one for very long.
When I went to visit my dad I always dreaded it. Would he look well, would he be sick? Sometimes he would look great, and other times he looked awful. Would he be awake, or asleep? It was hard to see him looking so frail and poorly. Would there be a new resident yelling or wanting to fight me for some perceived problem? Would I be asked too many questions by the staff again. They always wanted to know how often I visited and when. One time I walked into what would have seemed an 18th century asylum. I never heard so much screaming and carrying on by mult residents. Luckily it only happened 1 time. Must have been several new residents. I was so distressed for the situation, my dad having to live thru that, and not being able to do anything. I did talk to staff. It was so horrible. But I digress.

It is hard for family to visit because it reminds them of how awful dementia is. You generally leave upset knowing you can get a call any minute they are back in the hospital for the 20th time. Are they going to live through the night? They looked like they wouldnt last another 5 minutes, but they lasted another 9 months.

What do people do when they dont want to deal with something painful. They put if off. Keep themselves extra busy as to not think about it. Procrastinate. Come up with excuses. I think it is just human nature because it is unpleasant. I dont think they mean to be cruel with their absence. It is just so emotionally hard.

I don’t think it’s typical, but it does happen. People have an idea in their minds in how their loved ones should look and act, and when that changes, they cast about trying to find the correct way to act and thing to do. When they can’t find an answer within themselves, they just do nothing. I guess it might be a version of the “flight or fight” syndrome. Some people feel they need to visit for hours and hours and some people visit once every few months, or not at all.

Dont blame these people or stress yourself out. They are who they are and you cannot change their behavior. If they call to ask how she is, tell them and then mention, “You know, she’d love a visit from you.” Then just sit back and enjoy the uncomfortable silence.

I'm not sure if it's an instinct but it does happen. Relatives don't know what to say or do, it can be uncomfortable and scary. I wonder if these are close relatives such as adult children or more like cousins or nieces or nephews. Cousins, nieces, and nephews can get a pass but if her adult children aren't visiting her that's a shame.