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I would like to know if anybody elses D/A parent might have a vocabulary as such: My mom doesn't just talk or speak about things from the past or things that don't make sense, she has a different vocabulary altogether. Her words come out like "word salad"- as if you have written a bunch of words that are totally unconnected, then cut all those words up into little pieces of paper, put them into a bowl, mixed them up- thrown them up into the air,and what ever order they landed in- that's the way she talks- very bizarre- I don't think I've ever heard of anybody say they know of anyone that experienced this. Her dr. seemed to think it's normal- but I think it's not. I have talked to other residents in the nursing home she lives in- and they might talk about horses in the kitchen, or babies under the table- but my mom's sentences go something like this: "Hey! onions Charley them don't kidsya' boy!"- and then she'll just laugh so hard she'll come to tears- but on the other hand- she might say something as unusual as this," My babies long send Timmy start", and she'll start to cry, or have a look or expression that lets me know she's heartbroken about something. My mom has been this way since she was 69 yrs old. Seems like as soon as she was diagnosed, she lasted about 6 months at her home she shared with a relative, and then got very bad very quick. There was no time for any kind of therapy or treatment. I feel my mom has always shown signs of mental illness- I remember her taking "nerve pills" back in the 60's, in which she would sleep for days on end, leaving me as the oldest to take care of 3 younger siblings. I don't know if the heavy tranquilizers and sedatives have anything to do with her condition now- my question is for anybody that may have experienced the same thing with their mom and the way she may talk. It totally wears me out mentally trying to figure it out and answer to every thing she says or asks- but I feel guilty if I just ignore mom- feel like I have to smile and answer her- sometimes I wonder if she is really seeing me when she looks at me- her eyes look as if she doesn't. She can't seem to make eye contact- she looks towards me, but not at my eyes. I also am having a problem with siblings that won't visit the home our mom is in. I live 2 and a half hrs away, manage a visit once a month- I have a brother 30 minutes away from her , and a sister an hour away from the nursing home- neither will go see her. She's in the home now for 3 yrs- It was too late to get a P O A over mom by the time I found out she was as bad as she was- had to hire a lawyer, get guardianship over her. I didn't get any help with the financial part of that either- non of them even offered. The other sibling lives in another state-11 hrs from the nursing home- but at least she calls and checks on mom, sends cards to her(though she doesn't know any of us anymore or even if the card comes)- she gets to come and visit once a year- hoping somebody can talk to me about this- Thanks, Gen
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Lindy, We never know how long our parents will be with us. We don't know how long we can personally take care of them. Maybe your situation needs your Mother to go into a care home and you visit her when you can, ask your siblings to please visit her, too, or at least call her.
If your Mother has dementia, yes, it is a very demanding and different environment to be in. It is so foreign to our usual reality. We must come to the conclusion that they will never be what they were before. The way they act and talk and get angry IS Dementia. This we have no control over. It is a new experience and not very fun--but you, WE-- are in it.
We can take the experience as matter of fact, that life is tough sometimes and this is a tough period. We do not have to take it literally and be the one and only person to take care of Mother with dementia, and become a martyr. Then you cannot stand yourself, your siblings resent your attitude, and you resent them for not wanting to participate, etc. This caregiving life seems out of control much of the time. You must step back and consider it without your emotions.
I was in your situation a few months ago. I tried three times to put my Mother in a residential care home, and she was too disruptive for one of them, the second care home was not qualified to take care of D/A patients, so I brought her back to our home. In 2 months, I knew I could not physically manage her anymore and maintain a quality of my own life. There are some things I don't like about the third place, but she is clean, warm, fed, SAFE. They don't do the special grooming things I did for her every day, but when I go over to spend time with her, I brush her hair, do her nails, put on her lipstick, take her for a walk outside in her wheel chair, sing with her, etc. The things that make your relationship unique, you can provide for her in a care home. Then you can have space for yourself, your marriage, your other family and friends. You can regroup and get your balance back. There are social workers in the elder community that are licensed to counsel, and I would definitely go to someone very familiar with dementia and Alzheimer's caregiving demands. As we all say here, "You have no idea what it is like unless you do it. It is not like taking care of a baby." And so on. Only we know what it is like, so don't expect your neighbor or hairdresser to be a sufficient help as you vent. Vent here until and after you come to a healthy decision for your Mother and yourself. I wish you the best, Lindy. Hugs, Christina xo
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I agree with everything you are saying. I never expected to be doing this and doing it without the help of my sibling. Thank God for my husband and daughter but it does put a great deal of toll on my marriage and also financially. My husband and my health has also suffered through all the stress of managing alone. If it gets to a point where mom can no longer maintain at home alone anymore she will have to go to a nursing home or another family member will have to step up to the plate and take care of her 24/7. We both work and it is not easy and if she becomes unable to function we would have no choice even though I promised I would not do that. My family and I need to be able to go on with our lives even though I would like to be there for my mom until the endl.
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Did anyone think on how long they thought they would be caring for their love one at home? Did you think when it gets real hard I have no other choice but to have her go to a nursing home? Do you fear for your health, and your marriage when things get harder to do?
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Most of the time they do not help. One mother can raise 5 kids but 5 kids can not take care of one mother. The anger can eat you up but that will not help. If you have asked them for help and they did not you can assume that is their answer-it helps to vent here.
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Been doing this alone for 8 years. The first 7 1/2 years, my siblings didn't help. The last 6 months, they don't help and they blame, criticize, threaten and accuse. I'd like to go back to the days when they just didn't help - sounds blissful. So what happened? Well, I read all the articles. I tried to be very specific about my needs. I tried to have a family meeting and be on the same page. I tried to talk them into going to family mediation. All of that only put them on the attack. If you have healthy family relationships, maybe it will work for you. If you have dysfunctional family relationships, my advice is to stay in your ingrained dysfunctional role, forget them, vent here or with safe friends only and hire some outside help.
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Oh yeah! If you read on this site I would imagine that one out of every two has very little help from siblings. All siblings want to be involved in is the money! how much is there and how can I take it away from your and keep it all for myself!
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Hi Lindy20, yes, most of us have problems with siblings, period. In families with lots of siblings, there might be 1 or 2 who align with the designated caregiver, but usually, they do not want to disrupt their lives.
You can let it bother you like so many of us have done, or you can take our word for it and save your energy expecting them to change.
Think back over your lifetime and evaluate the positions your siblings took in various situations. Don't give them the benefit of the doubt, because when it comes to caregiving, it brings out their worst side.
Good luck to you. WE are your new siblings.
Hugs, Christina
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lindy20 - Many -if not most - of us do. And the lengths some of them will go to in the 'not helping' arena is often shocking.
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