One of the hardest parts of caregiving for me is that I don't mentally connect with my mother. I don't know how much is me and how much is her, but I've never been able to get a relationship going with her. Sometimes I think that maybe I'm going to spend time and talk with her or maybe watch some TV together. It never works out that way. Pretty soon I pull away and go about my tasks. She doesn't seem to want me around and is not very nice to talk to.
Sometimes she'll be doing things and I ask her if she wants some help. She says no. She doesn't want anyone to touch her when she walks. If I get too close to her, she stops moving and says I'm in the way. She doesn't see well, so likes to have a big area around her walker to navigate.
I have a feeling that most of this isn't my fault. It does make caregiving empty feeling, though. Mostly I feel like a visitor in the house that does all the tasks of keeping the house together. I don't feel like a daughter. I think caregiving would be a lot more rewarding if I could find a way to connect with my mother.
Wouldn't it be cool if our houses were social hubs of friends coming and going? Maybe not all the time, but sometimes would be fun.
My mother was a hermit too, but her dread didn't extend to her children - she wasn't cuddly, but she could be affectionate. The dislike of your being "in her way" and her edginess with you just made me wonder, that's all. Maybe, too, there might be some useful techniques you could pick up from that world?
I am finding it difficult to stay positive when there always seems to be a black cloud looming. I try to have compassion, but honestly...I am weary of all her suffering. Placing her in a nursing home would fill my sister and I with so much guilt and I know my mom would never forgive us.
I am in transition myself with employment, and returned to school last year to better my career skills. It has been a huge struggle. I recently turned fifty and am hungry to really live fully, but most days it feels like my life has basically ended.
I pray everyday that I will be released from this confinement.
CM, I don't think my mother is autistic. My father was probably on the spectrum, though never diagnosed. Asperger's wasn't even heard of in his day. I suspect that my mother's childhood was not as rosy as she portrays. She talks only about the wonderful things of her childhood and marriage to my father. I think she keeps all the bad stuff buried, probably even to herself. I doubt that I will ever know any of the bad things, but I can sense that all was not well.
my3kids, it sounds like your dad resurrects old childhood memories you have tried to close the door on. Sometimes I wonder if they are trying to push buttons, talking about things they know are upsetting. Or I wonder if they find the conversations more interesting if there is a bit of conflict.
Jessie I wonder if your mother never bonded with her parents and that is why she is unable to bond with you.
As I get older it becomes harder and harder both mentally and physically to get things done and many jobs get started but sit waiting to be finished. it is not because I am not interested but literally don't have the energy or strength.
i really do enjoy being on this site and talking to all my friends. Obviosley caregivers don't want their loved ones on the same site but I wonder if something like this where people being cared for could share their own thoughts and feelings.
Maybe Jessie's mom would write " I wish Jessie would not talk so much, it is really annoying when she shouts at me. Doesn't she know I just love these old songs on Lawrence Welk. Doesn't she know I just want to sit here and watch TV and not walk that stupid dog. it's cold outside and they go too fast for me. makes me feel stupid having to use that walker where everyone can see me" Someone else would write back "I know what you mean jessie's Mom my daughter wants me to go to the senior center on chair exercise day. if i wanted to sit a and squeeze a stupid ball I could do it at home in my comfy recliner not a stupid hard plastic chair in case I pee myself. I can tell you if they make me dance with Mr garlic breath again I will more than pee myself, and the bathroom....well I won't go there because after Mrs S has been in there you can tell what she had for dinner last night. Then there is the knitting group. I don't need triple zero needles to knit a dishcloth, Anyway when I get it home my daughter tells me how much she likes then uses it to wipe that stupid dog's feet. new did have dogs in the house anyway. Give me a herd on Angus and I'm happy. How I miss the farm"
Sorry guys I got on a roll and probably not much comfort for Jessie. I feel as though I am in a kind of no man's land between youth and useless old age.
Mirror mirror on the wall am I really that old?
I did have a few laughs at your descriptions as well, especially the Mr. Garlic Breath!
Isn't it strange that we can continue to feel responsible for their well-being? I don't know how much time I would spend with my mother if she went into skilled care. As long as I brought her things she wanted, I don't think she would care if I was there. In the past year she has been pulling away from everybody even more than before.
Caregiving can really bring up some very deep issues inside of us. When I wrote the first message of this thread, it made me think of Carly Simon's old song "That's the Way I've Always Heard It Should Be." It is a kind of depressing song, but thinking on the things can be enriching in a way... as long as we don't lose ourselves somehow on a long, isolated journey.
I don't know what I'll do if my mother lives into her nineties. I can't even contemplate the thought. It frightens me also to think that a person in a nursing home still needs a "helper" waiting in attendance on them. But my mother is the type who always wanted things done for her and I can see myself right there holding the water glass to her lips, spreading the blanket over her and folding it up again. I'm just praying it doesn't last for years on end because you can't really have a life and be doing that, and how do you maintain your spirits, and your enthusiasm for life that way?
I'm glad you found this site and we can all commiserate with each other.
I am trying to find work outside the home that will bring some joy into my life. I have alot of hobbies, but very little social life. Hoping that eventually will be able to afford to have someone to come in a few days a week and keep mom company. My sister is very helpful financially, but she has a large family and works in the family business, so most of the one on one is for me.
Some days I enjoy the time with my mother, but other days I feel like I am 12yrs old again living with the moody, depressed, controlling wench that I grew up with :)
Here's a quote from a mom with a child with Down syndrome: lifenews/2015/06/02/mom-posts-10-things-she-hates-about-having-a-child-with-down-syndrome/ "I am 30 years old, and it took me so damn long to learn what ’empathy’ is. It is simply placing yourself in the shoes of another person, and understanding how they feel." Some parents never had that capacity for any number of reasons; feelings were not things you were allowed to have unless they were just happy but not TOO happy and always under control. Sometimes that capacity is lost along with other aspects of brain power due to dementia. But empathy is what lets us connect on a deeper level. Some of us just have to settle for the shallower levels full of getting nails done and gossip and dumb TV shows with our loved ones. I don't how much it helps to be able to realize the depressed, un-empathetic one is the one with the greater problem and the inability, that its not a reflection of your unworthiness. The parent is a powerful mirror to the child...it is not easy to overcome that negative image.
I did eventually learn that I could not ever get the kind of unconditional love or acceptance from my parents that I craved and hoped for, even until early adulthood. I finally just realized it was a Yes, We Have No Bananas situation where Mom just did not have it to give and Dad was pretty much in the role of the Good Provider and did not challenge mom in the child rearing arena...I learned only later, after he developed dementia, that he not only loved and cared in all the ways he was "allowed" to, but was proud of me and his grandkids too.
There is a hymn we sing at church now and again about the folks that have gone on before us...there is a line about meeting up in heaven, "We shall feel their acceptance, and joy of new life" and I still tend to tear up. Acceptance would have been a nice thing to have in THIS world, no? But, sometimes you just have to plant your own garden and don't let anyone yell at you for displacing a few weeds to do it.
Heart, I do know what you mean about your mother not acknowledging your problems or feelings. With my mother, it can be a competition. If I have something wrong, she has something wrong worse. I usually don't even tell her if I feel bad anymore. I haven't had her turn her back on me when I say the way I feel about something. She generally gets mad right away, but sometimes will let it sink in and act on it the next day. I use this to our advantage now. I'll suggest something in the evening and get a firm no from her, but then the next day she does it. I think she realizes what is a good suggestion, but she isn't going to accept it without a little fight. :)
Oh, well. People on the group now are probably tired of hearing about my complicated mother. I think that she learned to not feel too strongly -- or at least not to show it -- when she was young. Vstefans was spot on with that. Maybe our parents were ridiculed or punished if they let their feelings show, so they just hid them away.
I said nothing but I feel abused, cheapened and in a way even though I KNOW BEYOND ALL DOUBT that I am doing a good job I am starting to take on board the negativity of it all. I am trying to stay conscious of my thoughts because I fear that I am slipping into a deep depression here. My doctor doesn't want to prescribe unless she has to (well that's reasonable if I dont need it I dont want it). So off to the carers help training we go. Mum will be looked after while I learn new techniques to help me manage caring for her.
I have to say I went with negative eyes, but it was really good to be in a room with 5 other really intelligent carers. It was also very interesting. There were two professionals there both clinical psychologists. Their opening gambit was we want you to be able to continue caring. Well that went down like a lead balloon. Of course you do said all of us en masse. You couldnt afford the round the clock care we give could you.
We understand dementia care better than most.....oh really said this adorable very elderly man who looks after his wife. Have you ever looked after someone with dementia 24/7 for 5 years without a break? No? Then what gives you the right to assume you have even a vague clue of what we are going through? BRAVO my man
So after a stuttery grim start we got into the feelings we all have. One of the women who was running the class said I hope you dont mind but I am going to tape the class. I stood up, picked up my bag and said enjoy the class. This is supposed to be helping us and I dont trust what will happen to the recording. My experience with social workers is SO bad that from EXPERIENCE there are very few professionals I would trust
Oh you have trust issues do you? I love all 5 of my compadres. The comments came flying
What do you expect? we get nothing from you and have to beg to get respite and have to pay for it (In UK the whole point of National Insurance was that you would be taken care of from cradle to grave its a 1948 thing that everyone believed)
You have earned more in the hour youve been stood here than we get all week and presume that you know about what we go through and we know all our journeys are different - you dont have a clue madam
If the government spent the 173 million pounds on the carers that do the care they would each get an additional 2k a year which would at least go some way to making them feel as though they had some worth
Trust is a two way street and if you want to tape us then you should have informed us well in advance I for one stand with this lady (me) and stood up
At this point 4 of us walked out to go collect our respectives. Now this is going to be problematic because they cant run a class with two people, especially if 4 are so angry that letters are likely to be written so they agreed not to tape the classes.
Well we spent 2 hours in total being told that it is not the person it is the disease we should hate - No? Really?!!! I said this is a massive assumption on your part that a) we dont know that and b) that our respective is a sweety. You haveheard what we said our resective are not sweet they never were and the dementia has emphasised all their bad traits too, almost unleashed them.
Anyway after 2 hours I went back to collect Mum...she is now soaked and I had to change her before we could go home. I got her on to the loo and rushed out to see the Psychs who were just leaving. I gave them a full on blasting for NOT arranging CARE then told them they had better up their game or I would not be back.
Still waiting to hear... I will keep you posted. Next week ...what is dementia? Well that will be interesting!!!! NOT
The other thing I recognize (at least in myself) is the lack of desire to have my mother show affection toward me. I don't feel close to her at all. In my case, since I am sole live-in caregiver, I am subject to alot of negative behavior toward me. She can absolutely say nasty things about me to my face and loudly behind my back but then she turns and tries to say how much she's 'grateful for me'. It's a kind of emotional abuse and I don't feel warm fuzzies toward her. So I've developed a kind of distant coldness toward her. My shrink tells me I am 'objectifying' my mother. I am.
Anyway, nice to hear people similarly experiencing these things---these emotions.