How do caretakers cope?

How do caretakers cope?

Posted in the Dementia Forum

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liquid

Dallas, TX

#1 Jan 4, 2008
I just want to know how to cope with dealing with a family member with dementia. Since I'm the only family member left and have been dealing with this for months, I'm very traumatized at the moment. Many times, I just want to get into my car and drive away never to see anyone else again. Just leave the state and start a new life with a new name.

I feel a bit guilty for this, but are these thoughts normal?
Fiona

Dallas, TX

#2 Jan 5, 2008
I have those type of thoughts everyday. I still might do it.
karen

Glenside, PA

#3 Jan 10, 2008
My sister and I are dealing with our mom. I have those feelings everyday. But I dont. I know that my mom would not do that to me...and really it is only that thought that keeps me going. I have talked to a therapist and she says those thoughts are normal, acting on them is not. So don't beat yourself up anymore than you have already. You are trying your very best. I find it helps to go to the support group meetings, and i am not one to air my laundry, but it helps just to hear that there are others out there who feel the same way - and it doesnt go on forever. I know that sounds harsh; but it gives you a glimpse that there is light at the end of the tunnel.
liquid

Dallas, TX

#4 Jan 13, 2008
Thanks, karen.
jano

Budapest, Hungary

#5 Feb 4, 2008
My mom shows all the signs of dementia but she doesnt't want to know about it. Whenever I try to convince her to see a doctor she becomes histeric, she says our family wants her to die etc. How did you do it at the very beginning? How to make her motivated without hurting her too much???
liquid

Dallas, TX

#6 Mar 23, 2008
jano wrote:
My mom shows all the signs of dementia but she doesnt't want to know about it. Whenever I try to convince her to see a doctor she becomes histeric, she says our family wants her to die etc. How did you do it at the very beginning? How to make her motivated without hurting her too much???
She got to a point where she would wander the streets outside the house looking for me. This was only because I went to the store for milk and she didn't remember where I went. The neighbors found her and kept her safe until I returned a few minutes later.

Since she didn't remember what I had told her and she wasn't getting normal night sleep due to the paranoia, we needed to see the Doctor. I convinced her that it was only to do some tests to see why she wasn't getting a good night sleep. Then the doctor kept her for a few days.

She was scared, mean, and verbally abusive to try to get us to get her back home that first night. It was awful but it had to be done. I hated tricking her but it was the only way. This old woman is not much as my mother anymore, but I am still her caretaker. I just have to realize that I'm not lying to my mother to get her to do what is safe and right, but that I'm lying to the dementia.

Good luck.

I still feel like running away, but somehow I'm still here.
jan

Toms River, NJ

#7 Aug 9, 2008
i love you. a person like me. i ave been taking care of my husband for seven years with noi help from his family. his children said he is not the man he used to be and just walked away. i couldn't believe it. i went throught denial, guilt, questioning if i had the disease not him to which my doctor replied who's taking the pills you or him. that't when reality set in. of course he is on the pills. i am fine. the stress is unbearable. remember you are human too. take care of you. no matter how much you take care of him you cannot cure him. you can make yourself ill though. it is disbelief and guilt that is running yoyr life. would you feel GUILTY if he got cancer? no. would you be more demanding of recieving help or getting legal help? Do it. you love him so therefore you can love you. if you don't who will.

s
liquid wrote:
I just want to know how to cope with dealing with a family member with dementia. Since I'm the only family member left and have been dealing with this for months, I'm very traumatized at the moment. Many times, I just want to get into my car and drive away never to see anyone else again. Just leave the state and start a new life with a new name.
I feel a bit guilty for this, but are these thoughts normal?
Barb

AOL

#8 Oct 15, 2008
I take care of a man with dementia, which is not what I would describe as classical dementia, but he can try my patience and sanity to the max with some of his antics. I've taken the sole care of him for a year and a half now since his wife died. Currently, due to his military service, at my suggestion, we were able to get him qualified for Elder Care Day Break, which gives me a few hours away from him twice a week.
Believe me, you have to not put yourself on a guilt trip for needing time away. Through hospice and Medicare, they give caregivers respite once or twice a year for something like 21 days when they put the patient in a hospital or nursing home. I am not availed of this service yet, but if and when I am, or if I can, I will take advantage of it to keep my sanity.
His dementia hasn't advanced to the point where he is violent or whacked out totally. So, I do manage to get some private time in my bedroom on the PC or just relaxing.
And most importantly, it's necessary to do a lot of praying, both for yourself, and for the victim of dementia. We can think along these lines that we reap what we sew, and so kindheartedness and compassion are a preservative to the caregiver as well as the loved one we are caring for. When we pray, God intervenes somehow and does the heavy lifting. God bless all of you. You are doing a wonderful work that you will never regret at the end of the day.
mrgary

AOL

#9 Dec 15, 2008
I'm the sole caretaker for my Mother. I gave up a great job (early retirement), great home, and lots of active friends, to move up to my Mom's house and take care of her. She's driving me crazy and I know she can't help it but she can't seem to remember from one minute to the next. Now she fakes swallowing her pills, says the shower water hurts her and she won't be still. I've had to lock up all the treats and refrigerator as she will eat constantly all day long. She's in her early 80's and I just turned 60 so I guess I'm doomed for this type of life for awhile. I'm searching for a day care so I can get away but have found none located close to her home. I too, try to stay in my room on the computer or watching TV, but it's so boring and the days last forever. Thanks for letting me vent!!
Barb

AOL

#10 Dec 19, 2008
Mr. Gary.......you're like the rest of us. Trying to live a sane life taking care of an insane person.

We need to be very careful lest we loose it ourselves. Prayer helps, but you need a support group or call a local Nurse Finders in your area.

If your mom is on Medicare, they will provide someone to come in several times a week. And depending on the stage your mom is at, sometimes Medicare or Hospice will provide her with a 21 day hospital stay so that you can have respite.

Caregivers really do need support themselves. I almost lost it tonight when at the end of an exhausting day, he tried to get into my closed door......no knocking, just trying to "break in". I felt violated somehow......and exhausted. I just wanted him to be in bed, and my not having to deal with him anymore for the day. I think I hate that one thing he does more than anything else.
mrgary

AOL

#11 Dec 21, 2008
Thanks Barb, Due to the Holidays I'm kinda lazy about searching for help right now, but will with gusto when Christmas is over. A friend offered to watch her for a couple of days while she's on break from her job, and let me have some free time. Also, I have to watch her now when we go shopping as she started taking things a or opening packages at the store and eating them. The nearest nursing home around here charges around $4000.00 month for private care and a room. That's a lot of money to spend, but I'm getting to the point where I may just go ahead and spend it and get some relief. Have a safe and Happy Holiday , as it may be. Gary
mrgary

AOL

#12 Jan 4, 2009
What do you do when they scream and holler that the water hurts when they take a shower and try to avoid getting wet? She will not get in the water and I have to move the sprayer to get her wet. This is really getting to be a problem as she has body odor and I can only get her in the shower about every fourth day, and it's a battle.
mrgary

AOL

#13 Feb 5, 2009
Has anyone heard ,or know of the type in home care medicare pays for. I'd like to qualify and get some of my money back, as I'm my Mom's only means of help, except for a lady that comes by twice a week and bathes her and shampoos her hair.
Barb

AOL

#14 Mar 2, 2009
mrgary wrote:
What do you do when they scream and holler that the water hurts when they take a shower and try to avoid getting wet? She will not get in the water and I have to move the sprayer to get her wet. This is really getting to be a problem as she has body odor and I can only get her in the shower about every fourth day, and it's a battle.
Dear Mr. Gary,
Have you tried getting her to take a bath? This might work better than showering now, especially if you include some nice smelling body wash.

Also, giving her 2 chlorophyll capsules per day deals with fecal and body odor.

Hope this helps. I feel for you :)

God bless you and your mother. I know this must be very hard for you,:(

Barb...

I'm on StrangerNTheLand@aol.com if you ever want to talk.
Barb

AOL

#15 Mar 2, 2009
mrgary wrote:
Has anyone heard ,or know of the type in home care medicare pays for. I'd like to qualify and get some of my money back, as I'm my Mom's only means of help, except for a lady that comes by twice a week and bathes her and shampoos her hair.
Mr. Gary...talk to your home health nursing service supervisor, and she will be able to tell you what Medicare will pay for.

Hopefully your mother's property was signed over to you before she became incompetent. If not, the state will no doubt take it, to compensate for the cost of her care if she were to go into a facility.

Respectfully, Mr. Gary, I know you must love your mother dearly, but realistically, you will not be able to continue to care for your mom as her health and mental disese declines and still keep your sanity. It will be better to place your mother in a nursing facility where the staff is trained to care for Alzheimers patients.

This does NOT mean that you are financially responsible for her care. You are her son, not her spouse. Most average people would be drained finacially to take on that burden, when at some point, if she hasn't already made advance arrangements, burial expenses will have to be taken into consideration.

God bless,

Barb
mrgary

AOL

#16 Apr 8, 2009
Thanks Barb, I will get back to you ASAP, and you've been very helpful.
Barb

AOL

#17 Apr 19, 2009
mrgary wrote:
Thanks Barb, I will get back to you ASAP, and you've been very helpful.
Hi Mr. Gary, I haven't been around for awhile. I was just wondering how this was playing out for you with your Mom. Believe me, my heart goes out to all Alzheimer caregivers, especially those taking care of loved ones they can scarcely recognize or relate to as the disease progresses.
mrgary

AOL

#18 Jun 2, 2009
I'm sorry for the long delay in responding to your post. I'm still taking care of her and it gets harder everyday but I'm hanging in there. I have a nurse once a week and and an aide comes twice a week to give her bathes and groom her. She still knows me , but talks out loud to herself all day and doesn't realize it. And we have a lot of potty accidents. The depends are getting pretty expensive.! Thanks for the hit. This is so boring and lonely to have to do this!
susesco

United States

#19 Aug 8, 2009
My husband and I are caring for his 86-year-old mother who has dementia. She came from Paraguay 2 years ago to live with us, and our lives have been turned upside down ever since. She is obsessed with a particular TV newscaster whom she thinks is in love with her and wants to marry her. She believes we are opposing her union with him, so she continually berates us for being cruel to her and her suitor. We can't turn on the TV anymore because she talks to everyone, waves, and even tries to kiss the TV screen. She also thinks the young man next door is infatuated with her, and is always asking me about his sexual relations with his wife. She gets very emotional and agitated about these delusions, and thinks that we are imprisoning her. She wants desperately for us to send her back to Paraguay, but there are no family members there willing to care for her. This whole situation is extremely stressful for both of us, but especially for my husband. He has long suffered from lupus, an auto-immune disease that can be life threatening, and which can worsen as a result of stress. I am very worried that he will get sick or die, leaving me to care for his mother alone. Since my mother-in-law has no resources of her own, our only hope is that MediCal (California's Medicaid program) might pay for nursing home care as her condition worsens. She is already on MediCal for her diabetes and other general care. Does anyone have any information about qualifying for nursing home care? Does the person have to be completely incapacitated before becoming eligible?
mrgary

AOL

#20 Nov 9, 2009
It's a process that takes some time but it's worth it. In Texas, my Doc. had her committed for physic elevation in a hospital, and they kept her two weeks. I was only allowed to see her one hour in the afternoon from 4pm -5pm. If I was late I missed that days visit. Then they sent her to an "Assisted Living Center" that had a special "Dementia" dept.( I had to give my approval) She's been there Three months now and is doing just great and I'm regaining my sanity and life. The past year was the worst year I've ever lived. The parent with Dementia is the worst way to finish one's life that you can think of. My Mom had people talking to her at night while she tried to sleep and she sometimes, didn't get any sleep for two or three day at a time, as well as me. I was losing my mind little by little. Believe me get her in a professional home care as soon as you can.

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