Many of us, myself included, come from a dysfunctional family which adds a lot of weight to the challenges of caregiving. I have read stores on various threads on other topics and decided it would be good to have a thread just for this topic for people to share, vent and discuss.
The idea for this thread originated on the thread named "The Caregiver....How are YOU doing today?"
My mother has early Dementia. I gave up 30 years of living on my own to move in with and become her caregiver.
I (thought) I left behind the VERY dysfunctional behavior that I grew up with, only to find that it's more pronounced.
She has always been a "know it all", head strong woman that pretended everything was OK in the middle of a hurricane, in a constant state denial.
Now with her disease, her personality and these behaviors are more pronounced.
Despite me giving her care and making sure her life at HOME is comfortable, I am constantly lying, being difficult, and questioned.
I realized my issues of growing up in a dysfunctional family and her behavior many years ago, however, and I was able to distance myself from her constant badgering about I need to do x,y & z with MY life. However, now I'm living with it as a grown woman.
It's HARD. I can relate to how you feel.
I like the above comment "no matter what she says or does, do not get lost in the craziness". This is EXCELLENT advice, but difficult to do.
Because my mom does not realize that she's got Dementia and she "feels" fine, she questions why I am here. She doesn't realize that she put off & paying her bills and ignored the financial mess she got herself into, long before her diagnosis. She never took her medication and now I have to give it to her morning, noon & night. She has bad knees (refused knee replacement years ago) and is a SERIOUS fall risk, because she doesn't want to use a cane. She is vain and cares about what other people think.
I am new to this (my mom was diagnosed about 3 months ago) so I am working on strategies to help me not react to her. For me, reacting makes it worse. It's easy for me to walk away, but because I am in the same house as she, it's HARD to escape.
I am going to follow your post :-)
Everyone else. I'll catch up when I have a little more time to type. In the meantime, keep your chins up, and keep on sharing...... it's good for all of us.
I received a call from APS today. The woman said she was following up on a visit to my mother's house a month ago and she wanted to know what is being done to help my mother. I told her mom had an MRI yesterday as part of a neurological exam and we are waiting for the results of that to determine a diagnosis of dementia and whether she is legally competent since we cannot make decisions for her until she has been certified incompetent. I told her I am over mom's house daily, on my days of work I am over 3 times a day making sure she is eating, she is getting meds everyday at the same time, and that she is safe. I told her mom is not wandering at this point in time. She said you are doing everything correctly. She said that we care correct that we cannot do anything more until we have the certification. She wanted to know if mom had an attorney and I told her yes. I told her we talked with mom's attorney in the fall because she cannot handle her finances, he told us he cannot help us until we bring him a paper saying a dr. has determined she is incompetent. She said that is correct, you are doing all that can be done at this time so I will not be following up with you unless there is some changes in the situation. I sent sis a email telling her about the phone conversation and she responded, "I guess they got your phone number from mom's PCP instead of calling me." Is this really want is most important...who gets called??? It's sis's own fault because she is not available most of the time. These are the boundaries she has set...I don't want to argue with her about it. I will do want needs to be done regardless of her being available. My vent and rant for the day!!
P.S...with your mom...glad she made it thru...so..she forgot she's claustophobic and she's forgetting her inhibition...what ELSE will she be forgetting??? =)
Anyway, my mom had the MRI today with no problems. Maybe she has forgotten she has claustrophobia. I left for home after the MRI and sis took mom to the lab for blood work and then to the eye dr. The eye dr. asked my mom if she could read a certain line of letters. My sis said mom blurted out, "Shit no!" Sis said the dr. busted up laughing and couldn't stop for quite a while. I guess mom is losing her social inhibitions now, Lol!! After things settle down, I will post addressing people more specific and what is going on in your lives. I am thinking of you all and thank you for your support, I couldn't get through all this without each and everyone of you!! Hugs to you everyone!!
Sharyn I am sorry for such sad news. You and your family are in my prayers. Blessings
(((((sharyn))))) of course you can express your feelings. That's what we do here. I know it is hard on you, as well as other family members. You didn't say his dad had died of the same thing 2 years ago. My bil died of colon cancer about 12 years ago, at the same age his mother had died from it many years before. He, at least, was 65. You nephew is much younger. It doesn't seem fair, I know. especially when you read about older people hanging on for so long. Please feel free to come here and vent about that too. I remember when my ex's sister died. I was not that close to her, but was to her mother - my mil at the time., and of course to my ex. The impact was great, and I had a lot of feelings to work through too. At one point I had quite a lot of anger, and had to avoid certain people I had focussed it on, as though I knew they didn't "deserve" it, but I still felt it. Eventually it wore off.
It's OK, book. I know you have a great deal on your mind between work and caregiving both parents. I don't know how you keep your head straight as well as you do.
Hi hessaw - interesting question, which has been touched on before in various places on AC. I kind of bridge the gap, being a distance caregiver for my mum who is 100, and being 75 years old myself. Truthfully, as we are a long lived family, I haven't given it a lot of thought other that making sure I had a decent income for my old age and working on my health. I retired only a couple of years ago. I have absolutely no expectations for caregiving as regards my kids. I think a major issue is providing for oneself financially. Another issue is living a healthy lifestyle which tends to promote better quality of life in the last years, as much as, or more than, many extra years, according to what I have read. It is something I work on, I really get concerned for the people who have given up jobs, financial security, friends, hobbies, and often their health in the process of caring for a aging, ill parent. It doesn't seem right to me. Who will look after them when their time comes? It is not a pattern that I would like to see passed on to the following generations. In the old days, there was more of an extended family to care for seniors, and that arrangement did not disrupt the life of adult children as much. Nor was there the prevalence of dementias as there is now, I think. Nor did people live as long. Society changes and we have to change with it. What are your thoughts?
cmag - hope you are sleeping better
margeaux - hubby should be back by now or soon, and with the computer!!!!~
austin - haven't seen you around much
everyone - take care!
Blessings - Joan
How can we, or, can we, prepare ourselves to spare our children this pain?
Mamoogins – I’m sorry that your father has gone downhill so fast. But I’m so glad that you found a very good NH that actually cares about their clients and the clients’ family. That’s really rare from what I’ve been reading on this site. I’m glad that you and your husband can have peace of mind that he’s being well taken care of.
Sharyn – I’m so sorry. It’s Okay for you to be weepy and sad. It’s not really all about you. He is family. I just don’t know what to say. I kept typing and erasing several times. HUGS to you, Sharyn…
Hugs to everyone!!
mamoogins - sounds like it was a move that had to be made and was the best for everyone. What a welcome he got! It sounds lije a very nice facility and a caring community. You are right - you couldn't ask for better care than that. I do hope that you are hubby can relax and have a break now.
cmag - sounds like your mum was spoiled in a sense, and running home could certainly be seen as not wanting to take responsibility - for herself, her marriage, her child (you) - she wanted others to look after her
((((((sharyn))))) I am so sorry about your nephew. I know it has to impact you. I am glad they have hospice to help them through this. I know the pain your sil and the family are facing and it is really tough. more (((((hugs))))) - Keep us posted.
Mamoogins, I am happy to hear you are feeling good about the snh your father is in. Now you and your husband can enjoy time together. If a trip is what you want by all means go for it, you deserve it and will have peace of mind knowing your father is being taken care of.
Good to hear from you Margeaux!
Just an short update: My brother sent an email, his step son is in hospice. Brother and sil are not going to work right now, doing everything they can to be supportive of their son and dil. Take care everyone!!
Hi, Margeaux, nice to see you back online.
Love, prayers and hugs to all.
He was released this past weekend to a skilled rehab/nursing home, where he stayed last summer after double pneumonia and congestive heart failure. It was like going home for him. He loved it there and the staff enjoyed him as well. As soon as in was brought in on the gurney, everyone was welcoming back (by name), the nurses were fussing because he was not on a certain hallway and wanted him back on their hall and he was getting high fives and hugs from everyone.
I really like this place and would recommend it to anyone needing care. Even some of the residents were there that he remembered and he kept wandering back to his old room, because he thought that was where he belonged. His old room mate would talk with him and then call for the nurse to gently guide him back to his new room. They are trying to work on getting the two of them back together again.
The administrator came up, gave me a hug and told me not to worry; that we had done all we could and now it was their turn. She told my husband and me to take a trip somewhere for a while and just relax, that we'd earned it.
You can't ask for better help and caring than that.
I must catcfh up reading everyone's situations. I've been w/o our computer as my husband took it w/him on this last trip out of town, and he is returning tomorrow.
I've been able to use my neighbor's computer, but I just log in and check the very necessary, but don't want to monopolize it. I'm grateful I can do that. There's nothing like having one's own computer at home. Anyway, I just wanted to let everyone know, that I've had to read some posts very quickly on acount of this.
I'm so glad my husband is coming home tomorrow, I've certainly missed him.
So, just wanted to say, "Hello." I'll be back very soon. Miss all of you! Much Love & Light! Margeaux
cmag - that is very good insight from mywitsend. As much as there may be some things you can say, as book suggests, that could help to some extent, your dad may never have the answers that he is seeking. Some things are not easily "fixable". I like what mywitsend says about taking responsibility - sounds like your mum was not good at that. Have you decided on how to deal with it?
susan - you are sounding a lot better than you were. Thanks for the love and support. I am so glad that your life took an upturn.
hi book - if you read my post again, I didn't say your childhood was terrible, I said that you had some horrible stories - the stories of abuse of children. However I know you have written before that your childhood wasn't great. I think I understand that you could not cope with knowing more about your childhood while caregiving your parents. Just the caregiving is traumatic enough. Seems they both are declining noticeably. You must have mixed emotions.
My grandson is a saver, actually, he handles his money well. It will not go on "toys". I am proud of the way he handles his money. A little proud grandma story - when he got his first paycheck for his first job, he put most if it in the bank, then spent a little on some clothes for himself from the thrift shop, and finally bought a small gift for his little brother and one for his little sister. It is one reason why I don't mind hiring him to do things. Nothing much different around here otherwise. I will know more about Gary's family when he gets back from his business trip later in the week.
mywitsend - that is quite a story about your grandfather, and hard to understand why anyone would do such a thing. Your grandmother sounds like such a dear.
yogi, It is so great that you are seeing your mum again - answers to prayers!!!
Hope everyone has a good week. More snow here - ugh! but the temperatures are not too bad. Gotta get to some inside chores today.
♥, hugs and prayers Joan
Grandson appreciates all the money he can get. It will be spending money for whatever he wants to get or go out with friends. I remember being poor with no money. I would skip lunch and keep the money so that I can buy a coveted toy. Every morning, I would search the playgrounds for fallen coins. Walking on the road from the bus stop to the house, I was looking for coins. Then, when I got enough money, I take the bagful of coins and buy the xmas nativity scenes that I was saving up for months.
Margeaux? Where are you? Has your husband taken the computer again?
It is not unusual for a elderly person to review their life and try to come to terms to with things. They either conclude that overall they had a good life or end up in despair thinking their life was in vain.
I get the impression that at 87, he is content with everything about his life as a whole, but that one thing. I think he is basically living for three reasons. 1. To care for his dying wife whose pulmanory fibrosis continues to worsen. 2. To see me and my family one more time before he dies. 3. To make peace with his divorce.
He told me some more information about that day which he had not told me before. They were in the process of putting wall paper up and my mother asked him for the car the next day so she could pick up more wall paper. So, he got a ride to work thinking nothing of it and why would he of for the previous day had been just fine. When he returned from work that day, he finds this note from her that he can find his car at the airport.
I've tried looking at this from various perspectives like the sociology of families and family types which were greatly different for these two; northern and southern; Presbyterian and Roman Catholic; etc. Each of those shed varying degrees of light on everything, but none are sufficient.
It is a mystery that I've never asked my mother about although I know she carries a lot of hate toward him which she wanted me to absorb, wanted him to never visit me, plus told me that he had died, but had no explanation for how come he was visiting me. My dad on the other hand has never had a negative thing to say about my mother and when I got older, he started telling me more facts about things, but now at 87 he is trying to make piece with his past and this is the one point that is unresolved.
My wife and I talked about this tonight. We came to the conclusion that possibly the key is in one major theme of my mother's life. She has always run away from stress. Mom and dad had barely been married a year when I was born. She wanted me raised with the help of servants like she was. He wanted me raised as an all american boy, whatever that means, When visiting his side of the family, she reacted strongly against them saying how much I looked like that side of the family to the extent that she said I was a ___ baby, her side of the family not a ___ baby, my dad's side of the family.
My wife and I think that mom just flipped out and ran. Years, later she flipped out and ran off to the beach house for months at a time while married to my step-dad after I graduated from high school and left for college. Before that, her work experiences were full of examples of her just getting flipped out and running away. I could go into writing about my childhood which I've done here from time to time, but I don't think it really applies to helping my dad make peace with that divorce which at 87 still haunts him like a ghost from the past.
My dad also told me tonight that her mother's pastor told dad that my mom had chosen the lesser of two evils in leaving him whatever that means.
Thanks for listening to my rant. I wish that I could help my dad come to terms with this.