Anyone else having trouble with non-social parent?

I finally stopped feeling guilty about my Mother. I was making myself sick with worry, 24/7, and I was not taking care of myself. I live in a Metro West suburb outside of Boston, 30 miles away from my Mother, and getting to her house in Chelsea, MA. involves driving thru Boston traffic, which has become a nightmare. I was feeling very guilty that we only went to my Mother's once a week. She will not come to our house, not even for a short visit, just to give us a break from driving back and forth. We are expected to go to Chelsea, all the time. My husband is 65 years old, & I am 62. He is the one who drives me to the city, but he is now getting a little distracted, so I am very nervous about him driving on the MA Turnpike. I am too nervous and can't drive on the highway. My brother lives 1/2 mile, just 5 minutes away, from our Mother's house. He is always too busy to visit, or help her out. She only calls him when it's absolutely necessary, because she does not want to bother him on his days off. I also have a Cousin who lives near my Mother, and she has been helping my Mother with errands, and food shopping during the week. She just started helping, because she lost her Mother (age 93), and her job, and she was bored and lonely. She liked having my Mother to talk to, but she also asked for money, and my Mother gave her $20,000.00, which my cousin needed for her rent and bills. My Mother has never, ever, given that much money away to anyone else in our family, not even to her Grandchildren. Of course, I would never ask her for money, and my 3 grown daughters never would either. The reason I stopped feeling guilty, was because I realized that no one had any consideration for me. My Cousin asked me why I was not going to my Mother's more often. Then she said that I really should sell my house, and move back to the city to be closer to Mom. I then remembered what happened to me, in the past. When I got married, and we had our first child, our apartment building did not allow children. We were looking for a new place, and then my Parents offered to let us move into their 3 family house, in the smallest apartment. My Mother still owns the house, and lives there alone. My Dad was going to redo the bathroom, but he never did. We had moved in with my Parents in their apt, but we could not stay with them forever. So, we looked for another apt, but could not find one in the city that we could afford, and we ended up moving out to the suburbs. My Mother never asked my Dad to finish the bathroom, so we could move into the apt.. They didn't seem to care that we were moving 30 miles away. I had to get used to living in the suburbs, away from all my friends and family, it was very difficult for me. So, when I stopped to think about it, my family was asking me to give up my house and move back to the city. We have lived here for 40 years, and I decided that it was not fair of them to ask me to move. I should mention, that we always had to drive to Chelsea to see the family, no one ever came out to our house. They always said, "you live too far away". I was getting so aggravated, until I realized that I should not have to change my entire life to please my Mother and the family. My Mother does not want any outside help, will not go to the Senior Center, or move to assisted living. She is blind in one eye, and will be 90 years old this August, lives all alone, has fallen twice, and a man broke into her house but did not harm my Mother. She would not call the police. SO, I REFUSE TO FEEL GUILTY, NO MORE GUILT FOR ME !!

Dear Starshine14,

From what you write it seems that your Dad's reality has altered. This is nor unusual, in fact, it is almost predictable.

What is often difficult, or even impossible, is for the non-specialist in aging to appreciate the changes in thinking that dementia imposes. That is why clouds, even non-existent ones, can be threatening.

Another consideration is that as we age, our arteries harden, and this also can lead to angry behaviour. If thoughts and words do not match in our heads, the attendant frustration often causes outbursts of anger.

The most important thing for you to remember is that when Dad exhibits behaviour and emotions that seem out of place or, perhaps bizarre, he is not directing his anger and frustrations at you. He has an inner reality that others cannot see, but he has to cope with it the best way he can. Be gentle and tolerant to his oddities, and you will both be more settled and calm.

I wish you well, but accepting him as he is now will go a long way to ease the tensions you feel at finding your father has become a stranger. Believe me, it is generally far worse for the patient than it is for the carer. Since there is little anyone can do to change his behaviour it is better to accept that this is the way he is now, and remain calm amide the storms.

Good luck.

My mother now has dementia and she doesn't even let me socialize. If someone calls me on the phone she throws a tantrum until I have to hang up. If I talk to my neighbors she just makes faces and starts saying mean things about the neighbors and I have to go in. She doesn't watch TV anymore, she doesn't get entertained with anything. It has taken over my life. The only thing she wants to do is sit in my garage and watch the cars and people go by, and every time she sees someone or some car go by she says: "maybe you should ask them if they can take me there". I'm not sure where she wants to go, but she tries to leave on her own, so I can't really do anything at home because I have to be watching her in the garage to make sure she did not leave. I sometimes let her go all the way to the next door neighbor's house to see if she will come back, but she doesn't and when I go to get her to come home, she fights me and says horrible things to me. I just don't know how much of this I can handle.
Sorry, instead of trying to help you, I made this my complaint. I just don't know how to help you, since I can't help myself.

First - I think that Caregiver99 did not mean what FedUpNow interpreted - out of context, that is what it sounds like. I also agree that it is NOT true that the cared for person is more important than the caregiver. The needs and wishes and struggles of caregivers are absolutely as important, often more important to recognize, than the needs of the cared-for person, for the caregiver is supporting that person, and needs others to value and help THEM, not everyone rush or feel guilty about not helping the cared for person directly.

But in context of the whole post, it seems to me that what CG99 said, was, the wishes of the cared-for person, are more important than the IDEAS about what would be a good day, or the memories of a caregiver, about that person's capabilities, may be outdated, and in that case, it's more important to let the cared for person have the dignity of making choices. When one old, surely one has the right to make choices - why should agencies who do care, wake everyone up early in the am, planning hours that fit a hospital, not someone living at home?

I do think however, that it is really worth an effort to try to help an elder find some way to have more people around, to socialize with, not just one person. I understand why they are afraid: they don't hear well, so conversations don't go as well as before. They are used to focusing on their own struggles, and that is normal as we age and often not seen as a good conversation topic. If they have paid caregivers, they don't quite know how to fit those nice people, who also become their companions, into the larger social world. So they need to expand GRADUALLY, with someone who understands and respects their fears.

Establish some repeated schedule with that person: Wednesday, it's lunch out, always at the same restaurant. When your senses go, you do not enjoy variation as younger people do - it's all a blur, and confusing. But if you have Wednesdays out at lunchtime each week, you get to know the waiters and personnel. You can then have a friend or paid helper join you. Eventually you can drop out, but the elder will have adapted to the routine. I brought my disabled brother to the school for the first two classes of adult ed - only after he had learned to feel more aware of his surroundings, could he enjoy it, and he went on to enjoy it for the next 14 years. But every fall, I made sure he was signed up, and I asked about homework or what they were working on - I added my support to social settings that others organized. Better to focus on only one topic, activity or class - not expect an elder to feel hopeful about variation or lots of classes. And include the transportation as one activity. It's about their experience, not about the excitement of the topics or the kind of people - they need company to reassure them that they can actually still manage to interact with a world, even though their needs make them slow down.

Mom is the same way. Complains that she hs no friends and that there is nothing to do at the assisted living facility. Always wanting me to take her around the center. She has been there for 3 years now. In reality there are exercise classes, church, bible study,etc. Finally just decided to let her be - she does just fine when we are not there! Let go of the guilt and take that first step! Your loved one will be just fine and you will be much more rested! Best of luck and hugs!

loridtabbykat, are you still here? You have a lot of very much good advice here, but now, what is it that you would want to do? I am sure you must have some Ideas of your own and what ever they may be, it would be nice to share them and I assure you, what ever action you do decide to take, you will have so many wonderful people here that would encourage, accept and support you all the way because if you don't take care of yourself first, then you end up not being able to take care of anyone. That is a TRUE story... Please let us hear from you, you work all those hours, I hope you are doing ok and if ever need be, let someone know if you need immediate help to prevent "burnout", Thank you for your precious time and please don't feel overwhelmed cause in helping you, helps others to as well as myself... HUGS!... ? lemonade anyone?????

Alice F's idea is great. My father wouldn't go anywhere without me going with him also, even when he was at the NH. He wouldn't go to any of the activities or to the dining area without me. But, when people would drop in, with some sort of purpose, he always had a nice chat with them. I started having the activity organizers deliver a newspaper each morning for him, he loved it when they would come in. Also, the man who cleaned would stop in to talk to him too. The girls who brought his food tray would stop and talk a little. He felt that he was making their day brighter which in turn helped him.

You Mom may do better with a daily companion (or at least someone coming in 2-3 times per week). Check with your local Area Agency on Aging or Bureau of Senior Services to see what they offer. You can contact your mother's church (if she attends) they may have a friendly visitor program. Your Mom may be insecure to be more social without you. She needs the confidence to go out on her 'own without you'. A caregiver can also provide personal care or chore service if needed.

I was exactly in your spot loridtabbykat. My mom loves to call her self "very shy" and would not socialize without me or my sister with her. When I worked, my mom who then was in the early stages of Alzheimers, would wait till I got home and then I had to take her out, then like you, walk and play with the dogs, do the kids stuff (yes, I have kids) and then at 10pm it was "my time". We did get her involved in the Adult Day care at the senior center - they had a special Memory Fitness class. At first she was real reluctant and would refuse to go. But we made her go, and after a while she loved it and looked forward to it every week. And we were able to increase the number of days she went as well. It helped me a lot. Good luck and hope this helps.

My father is a recluse too; won't even go into the backyard! It's a trial to get him to bathe, to get a haircut. Yet he willingly goes to the doctor, body odor and all! Because doctors are gods to him. I've stopped fighting. I provide food, medication, clean surroundings and clothing and what will be, will be.

Loridtabby, this is exactly my same story with my mom. Totally has isolated herself and absolutely won't socialize without me. We live long distance so she goes months without seeing anyone, no one even calls her except me. Breaks my heart. I visit, we go out, I take her to senior center and introduce her around, sit there hoping she will engage, but she just hangs on me and has no self confidence any longer. She hasn't been to church in 4 yrs, friends no longer call or invite her out. She only wants me and I can't be there.

So I feel your pain and it's heartbreaking. I've tried to hire help, companions, etc but she fires them or refuses their help, services. I wish she would move to AL but my father on his deathbed declared to her "you will always have this house, you have money, you never have to leave this house" -- and she now refuses to leave but yet it is a lot of house by herself that she has a hard time keeping up with. He did her a terrible disservice. He should have given her permission to move closer to family or downsize vs acting as though she needed to preserve their "legacy" and acting as though moving was "weak" and giving up.

I have given up and know she is lonely. When she tells me "it's lonely", I remind her that only she can change that.

My gosh, 41 answers! I've been away, busy, since I wrote this post. It is comforting, in a weird way, that there are so many in the same situation. I feel like I've been running a rehabilitation center from our living-room. The rehab has been going on since Last Oct 2, 2013 and hopefully will come to an end in a month or two as Mom's strength increases back to where she once was before the multiple surgeries on her hip. Nope, Mom doesn't have dementia, not yet, but will if she doesn't get out of the house. I think we have convinced her to go to a weekly Senior Exercise program, where after an hour of Exercise in a chair, they are served lunch and can visit each other for another hour. We are very active in our Church, until the last emergency hip surgery 3 weeks ago. Our Church has a woman's group that meets on Wed, and I was dropping her off on my way to work, and someone takes her home. I am also getting ready to take her to the Senior Center at least once a week, where they have lunch daily. I know she has friends that go to the exercise program and I know she has friends that go to the senior center lunches (I've called them and talked to them at length about my struggles). I am hoping, truely hoping, that once Mom goes, she'll see that her friends are there and it'll turn out to be a fun thing for her. If I can be allowed to vent for just a minute...I'm sick of it, I'm sick of the rehab living-room, I can't wait till this is over and she's recovered. Ok. I want to thank all of you for all your posts! I've read every single one of them, and I will be re-reading them again. Two of our robberies were from the reputable caregiver organization here. My Mom's lifetime collection of jewelry, diamonds, blue topaz, pearls, rubies, tanzenite, emeralds, thousands and thousands of dollars worth ... and what little I had is all gone. I've been working our home owner's insurance to get some recovery for that. Oh, I can't tell you how busy I've been, but I know many are in the same boat as I am.

LOL Daaang... Alrighty then you go lorditabbykat! Sorry for you loss with the jewelry but so happy for your resolution! Thumbs up 4 YOU!...

It's so strange, too, this loneliness people with dementia have. Dad is mired in depression because of his loneliness but he refuses to go out, won't socialize when people do come over and just spends day after day, hour after hour in bed. No amount of coaxing will get him motivated. I truly think it's part of the behavior that comes when the brain's signals start getting tangled; people lose their ability to figure out how to make themselves feel better, and often get downright hostile when others try to offer suggestions.

Can you talk to your neighbors and see if one or two of them could drop by and visit with mom, and ask her to walk with them? Maybe they could state that she would be helping them by keeping them company or identifying flowers. My mom would complain that all her friends were dying and she didn't know how to make new friends. I think my mom was scared and didn't remember that friendship starts with conversation. So if a neighbor drops by and starts a small conversation, that would be a beginning.

It's a tie, but the responsibility sometimes lies entirely on the shoulders of the caregiver. My brothers and I kept our mother in her home until she was 100. She was in nursing care for only three months after she could no longer walk. I have taken care of my very ill husband since his first heart attack in 2001. Now, he's had three stents, two strokes, one aortic ablation, two more heart attacks, has COPD (asthma, asbestosis, silicosis, aspirational pneumonia), has had an esophageal expansion, has Lewey's Body Dimentia, is incontinent, and can barely shuffle. He yells out things in the night, wakes me at 2, 3, 4, or 5 am to tell me he's awake now, and I have to put his legs back into bed and recover him a couple of times per evening. I have the work; he can do nothing. He would if he could. He doesn't even realize what I do at this point, nor does anyone else I know. Also, he does not carry on the lovely conversations we once had. We haven't had intimacy besides my bathing/showering him for at least fifteen years. He's been on paliative/home health care, but I've never had anyone watch him, wash him, feed him, dress him or clean up our house. We have no children who live anywhere close enough to help, nor do they have money for assistance. Of course, I have not asked. I still think we're equally important, but I'm clearly being overworked. I don't have the money to say "enough is enough!" I would if I could, and I wouldn't feel guilty. I've done the very best I could for him and my mother. Our life savings was stolen five years ago. If I had the money that was taken, I'd get help. For the first time someone is coming tomorrow so I can go to the doctor and get a cap fixed on my tooth. The afternoon is going to cost $150 we cannot afford. No matter what, I think the judgement as to who is better does not belong with the cared-for or the caregiver. We all just do what has been handed to us or we do the "right" thing. What are we going to do? Let the cherished partner die? I love him, and I'd be upset if he were the caregiver and let me die if I didn't want to.

Caregiver, I too disagree that the caregiver is of less importance. Nothing happens without us. Yes, I agree we should relax, be kind, tolerant & gentle. Easily said. My life has been taken from me. No sibling help. I am resentful, angry & depressed. I didn't choose this role. I feel guilty when I read posts like this, but appreciate your thoughts.