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Old 04-06-2009, 03:34 PM   #1
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Unhappy Sometimes I feel like a walking zombie caring for my parents


Hello, I'm new here and I am looking for support from members that my be going through the same things I'm going through right now. I have stopped working to take care of both my parents, one is very ill and the other has dementia/alzheimer's (is there really a difference between the two?)my dad, who has alzheimer's is the one that is really something to deal with. I find myself constantly trying to mentally prepare for whatever he may say or do with each passing day. As of right now, to him, I'm a stranger in the house a visitor, if you will, that just won't leave. He knows my mother but me? his daughter? very rarely. I have to constantly keep my eye on him because he will wander and has, especially during the night, which means I'm not getting much sleep. One minute he'll do for himself and the next minute his behavior is totally off the wall. When trying to talk with him, he'll completely ignore me by either walking away and motioning his hand (I'd say its almost like a middle-finger sign)or begin talking to my mother. I have a truck load of emotions that I'm going thru right now. It hurts really bad that he doesn't recognize me anymore but I have to say that there are times where I'd want to just knock his azz out!

 
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Old 04-06-2009, 05:26 PM   #2
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Re: Sometimes I feel like a walking zombie caring for my parents

I am a veteran of dementia care, my Mom passed away from it in 12/07.

Dementia is a term that covers various types of memory loss. Alzheimer's is a subcategory under that heading. Many people say things like 'dementia is bad but Alzheimer's is worse', but that is only old wives' tales. One of the worst types of Dementia is frontal lobe dementia.

However, mostly all the dementias respond equally well (or badly) to currently available drugs, and there is supposedly a better drug somewhere in the pipeline of testing, which may even reverse or cure damage.

Thus far it is more or less trying to slow progress at the beginning, coping with certain types of behavior such as aggression and violence, and learning coping mechanisms.

In the final analysis, having the person cared for by professionals and trained helpers in a good nursing home is the best solution. Usually families fight that idea for a few years before they succomb to it and wish they had done it sooner.

My Mom went to a lovely nursing home on Long Island. She had fallen and broken a hip and her Dementia made it impossible for her to cooperate and do the needed excercises to get well, so she never walked again.

The NH treated her well. Everyone loved her, and she was happy there, until her death 2.5 years later at age 99. I lived with her from the middle stages of AD until she became increasingly difficult and confused, wandered off while I was at work, etc, necessitating a home health aide to come and stay with her. I lived there (Queens, NY) for 5 years.

All the things you describe are 'normal' for the disease.

People here have loved ones in all stages of the disease, and all of them have found ways of coping with it. I am sure you will get many answers to your questions. Hang in there, do the best you can, don't shy away from getting help, and remember, there is life after caregiving ends!

Love,

Martha

Last edited by Martha H; 04-06-2009 at 06:49 PM.

 
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Old 04-06-2009, 06:26 PM   #3
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Re: Sometimes I feel like a walking zombie caring for my parents

Janaye2009

Sorry for what you are going through but you must do what is best. First off you had no right to quit your job. You will have trouble finding another when the time comes. I saw my sister who lost her job due to downsizing, become so invaluable to my mother she gave up her whole dang life and now is suffering because after Mom died so too did any money coming in.

Your Dad needs to be hospitalized and then moved to a nursing home so that you can focus on your mother. Or if your mother is that ill, she needs to be in a hospice facility or a nursing home herself so you can concentrate on your Dad.

i vote on the side of caring for your ill mother. Your Dad isn't going to know one way or the other and will benefit from the locked unit. Please take this to heart
YOU CAN NOT NOR SHOULD YOU CARE FOR BOTH AT THE SAME TIME. the drain on you emotionally, physically and spiritually. Even if you got someone in, they only come in for an hour or two.

You don't say if you are an only child or not. If not, you MUST get your siblings involved.

It will get worse NOT BETTER. Please take care of yourself for these others who need you but you don't have to do it all yourself and you shouldn't think you are.

Please reconsider what you are attempting to do.

CaringSister54

 
Old 04-07-2009, 06:29 AM   #4
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Re: Sometimes I feel like a walking zombie caring for my parents

Hi Janaye, and welcome to the board!

I commend you for your willingness to take care of both of your parents. You are a DEAR, to say the least!!!

Every situation is different, and you need to read here, talk to people in person if you can find some who are dealing with this, think about all the advice you get, and then do what works for you.

When we were first thinking about having my husband's mom, who has Alzheimer's, come to live with us, I asked my Bible study group to pray for us as we made decisions. About half the room of a dozen ladies immediately blurted out, "you don't want to do that!" One even rose right out of her seat! I was very taken aback. But we went ahead and brought her here. She's family. As long as we're able, we'll take care of her. Now, 6 months later, we know we made the right choice. Is it hard? Yes, every day. Would a nursing home take better care of her? Absolutely not. As I've talked to different facilities making a plan for "just in case," I've been surprised that they won't bathe her everyday, won't change her sheets everyday, and won't do little things like roll her hair for her, or treat her disgusting toenail fungus. This woman stinks by the end of the day. I can't imagine her not having a shower everyday. No one would want to be near her. Her clothes and sheets need to be washed everyday, too, for the same reason. (Okay, the sheets could go two days, but I refuse to have any unnecessary odor in my house.) Having her hair put up in rollers is a great pleasure to her, even though she takes the rollers out and makes a mess of her hair again. She always complains that her feet hurt, and now that I've gotten her toenails a bit better (one was a half inch high with fungus when she came to us!) and trim the nails and callouses, they hurt her much, much less. No one in a facility is going to do those things for her.

She has days when she thinks I'm the neighbor girl, and days when she thinks my husband, her son, is her brother. We remind her who we are. Sometimes it clicks, sometimes it doesn't. We just roll our eyes and laugh. We talk about her past with her constantly, about her brothers and sisters, where she grew up, what they did when they were little, etc. She relaxes and laughs, which is so good to see. She would certainly not get any of that in a facility.

There will come a time, maybe even now, when you'll need to look into placing your dad someplace. You'll know when that time has come, but have a plan in place now, as it can take months to place someone. For us, we plan to keep my mother-in-law with us for as long as she's not a danger to herself or to me. I'm disabled myself and am not allowed to pick up more than 8 pounds. Once she's not able to get herself out of bed, etc, I won't be able to help her with that. At that point, our plan is to hire someone in the neighborhood, if we can find someone, to come in for an hour a day to help me get her up for the day. If we can't find someone, my husband and I will just have to get her up and going before he goes off to work. My sons still live at home, so they can help me periodically when they're in and out between classes. If all else fails, we'll use an in-home nursing service.

I have her go to a day-center two days a week, which gives me a break. If you have something like that available in your area, I highly recommend it. They take good care of her and have tons of activities all day long. She loves it! If we could afford it, I'd send her everyday! Honestly, though, that would probably be too much for her. She's be exhausted. Two days a week is good.

How does your dad affect your mom? Does it upset her to see him like this? Would it upset her more to not be seeing him?

I am concerned about your not getting sleep. Are you constantly awake listening for your dad? I need to lie down during the day periodically to take the stress off my back. I'm fortunate that my mother-in-law likes to nap! I have a motion detector in the doorway of her room, which beeps in my room if she goes past it. I can lie down whenever she does and I'll know right away if she gets up, so I know when I need to get back up myself. I also have two more motion detectors in the two doorways of our dining room, which is where she sits to work her puzzles --- 24 piece puzzles on a 3 year old level, which she can no longer do for the most part, but she tries --- and I can go lie down while she's sitting there. The same receiver in my room beeps if she leaves the dining room. If a motion detector won't do it, you may need to have someone come in at night so you can get some sleep.

Keep reading here and you'll get ideas that may help you. This is where I got the idea for the motion detectors. I do feel your pain, dear Janaye. I wish I could give you a big hug. (((((((hug))))))) You hang in there! I wish you the best as you make decisions. It's so hard to care for our aging and ailing parents, but if you're willing and able, you'll be such a blessing to them! One day at a time...

Blessings,
Emily

 
Old 04-07-2009, 07:39 AM   #5
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Re: Sometimes I feel like a walking zombie caring for my parents

Welcomem to the groups Jan. I hate you need to be here but you have found the right place. We have all been or are in a similar situation. It's a great place for advice and support from those of us that are where you are. I have two parents with dementia so I know the true meaning of "double the trouble". It is expotential!!

My first thought was.... we have another super woman impersonator. I say that with a kind heart and a smile. The desire to do everything we can ourself for our loved one will often cause us to dig a hole we don't know how to get out of. After we jump off the building and realize our cape is just tissue paper, it's hard to get out of the fall. I was there...

Dad has vascular dementia and Mom has ALZ. We tried to keep them at home but it became impossible. We tried to keep them in an assisted living facility and that became impossible. Just last weekend we moved them to a locked ALZ unit. It took 24 hours of trying to keep up with Mom while reassuring Dad to let me know that I had made the right decision. They are now grounded and confined to the four walls of the unit.

Both of my parents wander. Dad, who is a fall risk, would head down two flights of steps and out the back door while Mom would go screaming in a state of melt down out of the front door to go home. A staff of people could not keep up with them both and is the reason for the recent move... along with others. It is the wandering that bothered me in your narrative. In 24 hours Mom slipped away from us several times. It's especially difficult when your attention is diverted to the other parent. I do hope you have an alarm system in place to warn you of potential "escape".

I do commend you for what you are trying to do but I also know that the lack of sleep, frustrations, emotional drain, and sheer exhaustion will get to you. You will wear down and the job will escalate. So think long and hard about your decision to tackle two full time jobs at once.

It is ok to get help. Whether that might be in home or facility help. Sometimes knowing when you can't do it all is better than your best effort to do it all. Mom and Dad are not completely happy where they are but they are better off. A trained caring staff of fresh faces every 8 hours and an army of auxillary staff can and will do a better job than just "ME". I have figured out that I cannot do what dozens of people can accomplish. It was such a relief to take off my tissue paper super woman cape. With the acceptance that I couldn't do it all came a new found realization that I could, with help, do what was best for Mom and Dad.

Just food for thought In the mean time I wish you well in your endevors. I wish for you the patience and understanding to deal with your Dad. Yep you want to kick his patootie but you have to remember that he is doing the best he can. When you do lose your patience, remember, you are also doing the best you can. I will keep you, your Mom, and your Dad in my thoughts and prayers!!

Love, deb

I just called the locked unit and my Mom and Dad did ok during the first night of their new placement. Mom says she "doesn't fit in with these people" because there is "nothing wrong with her" but so far so good

 
Old 04-07-2009, 09:15 AM   #6
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Re: Sometimes I feel like a walking zombie caring for my parents

Janaye,

It's a tough road that you're on, to say the least.One thing that you need to make sure of is that you have both durable and medical Power of Attorney for both your mother and father, along with having access to bank accounts for both of them. This needs to be done now so that if anything else happens, you will be able to have access to their medical accounts and their financial accounts without any issues. It's something that you wouldn't normally think about, but definately needed... Of course if you have it, great!

You needed worry about your feelings. We have have them also. My mother passed away one year ago from this wretched disease. My father died 5 weeks earlier from a AAA, but he also had dementia. I have lived through this and it isn't pleasant. It's hard to keep caring for someone who has forgotten who you are, forgotten how to love you and to say I love you. Forgotten all the good times that you used to have, all the joy they used to bring into your life...yup, it's tough...and it isn't going to get any easier, in fact, it's going to get worse. And that doesn't bring any joy into your life at all either!

 
Old 04-07-2009, 01:44 PM   #7
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Re: Sometimes I feel like a walking zombie caring for my parents

My Mom's NH did all those things. She (and any other residents) never stank. They were bathed daily or more if needed, sheets changed daily or more. Hair was done, nails polished, spray cologne sprayed on. The nurses aides were wonderful. They loved Mom and she loved them.

But we may have been lucky - so to be sure, if the time comes, visit several NHs at unusual times and look around. Sniff the air. See the people eat -are the helpless ones being patiently fed?

Good luck whatever you decide to do.

Love,
Martha

 
Old 04-07-2009, 03:53 PM   #8
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Re: Sometimes I feel like a walking zombie caring for my parents

Martha, it's good to hear that there ARE good places out there. I haven't found any around here yet that will do what your parents had, but maybe I just need to do more calling.

Thanks,
Emily

 
Old 04-07-2009, 09:17 PM   #9
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Re: Sometimes I feel like a walking zombie caring for my parents

Emily, check your department of facility services or whatever state agency governs the nursing homes. Here they have instituted a star rating for nursing homes (they are required now) and assisted living (voluntary at this time). You can also check for any deficiencies. Those are reported incidents that endangered a patient. If you have such in your state it's eye opening.

When I did some research I found a couple of major deficiencies at the facility Mom and Dad were moved out of. Actually I was not surprised at all. The one they moved into.... has the hightest star rating in the state for Assisted Living/ ALZ units and so far it has shown.

It's worth checking out to see what you can find that way

Love, Deb

 
Old 04-08-2009, 09:57 AM   #10
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Re: Sometimes I feel like a walking zombie caring for my parents

Thanks, Deb! I'll check into that!

Emily

 
Old 04-08-2009, 11:27 PM   #11
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Re: Sometimes I feel like a walking zombie caring for my parents

Hello Everyone,

As I sit here reading your replies, tears have fallen from my eyes and my heart has been touched in a way that I cannot describe right now. All of you have given me encouragement as well as very crucial and helpful advice that I had not even thought of nor was aware of the steps that I need to take.....like right now!

I have been blessed with good parents who have always been there for me and my siblings, offering words of encouragement, teaching us right from wrong, offering advice (even when we didn't want to hear it). To see them in the state that they are in breaks our hearts but at the same time we understand that we must be there for each other as much as we possibly can. Yes, I was trying to be "superwoman"...."I got this!, I can handle this! I'll call ya when I need ya!" But with each passing day, it didn't seem to get any better and during all this I was slowly going down hill..... and trying to work at the same time. Now I don't have any money hidden anywhere nor do I have the kind of bank account that would allow me to stop working.....my mindset was (and still is) that my parents need me to be there with them. Mind you, it wasn't an easy decision to make but I had to set aside "me" and focus on the care and well being of my parents.

When my mom was hospitalized recently, I began noticing that some of the nurses and the assistants didn't seem to have the compassion or the patience when caring for her. I had to put them in check and let them know that God forbid, this could be them one day. They are rough with their handling of the elderly, their bedside manner leaves a lot to be desired. You hear and see news of how the elderly are being treated in the nursing homes, the abuse, the neglect.....I don't want my parents to go through that.

Now, I know that there is going to come a time where "the decision" will have to be made to put one of them in a "home", so my siblings and I have started to discuss the possibility and look into doing some researching to see what is out there.

Again, I thank each and every one of you for your support and tender words of encouragement. I don't feel so "alone" anymore!!

 
Old 04-08-2009, 11:56 PM   #12
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Re: Sometimes I feel like a walking zombie caring for my parents

You are definitely not alone Jana. I have been through the same struggles that you are going through. I have just moved my parents for the second time. First to AL and now to a locked unit. You absolutely have to do your research and check out the facilities. I made several trips to the facility my parents are in now. I stopped family members and talked to them about their loved ones. I checked the every rating and deciency listing I could find. One of my first questions of a facility was about staff turn out. If there is a high turn over rate you need to watch out.

I worked in a facility for years. It is possible to find a good facility. You can also find some not so good ones. You just have to do your homework and be thorough. And pay attention to what family members say.

When we first moved Mom and Dad into the AL facility there was not much research that went into the facility because we were in a crisis situation. On the day we moved them in a family member of another resident just looked at us and said... be watchful. It took a while but I understand what she meant. Mom and Dad did not get the care they deserved and I am glad they are no longer there. On the flip side I was very thorough before this move. The facility they are in now has a very staff turn over rate. Many on staff have been there for the entire 10 years they have been open. I talked to many family members and they all gave glowing reports. I checked the state star rating and they have the highest rating in the state.

When I took the ISP's (individual service plans) from the old facility to the new facility they threw them out because they were "incomplete". When I transfered the meds (they use the same med service) there were multiple mistakes in the meds. It has only been a few days but the differences are dramatic.

What amazes me is that both of these facilities are run by the same corporation. It's all about the staff in the facility. So if you see negative run. If you see positive then put it on your potential list.

My best advice to you is do what you are doing. Start researching facilities long before you need one. The more you know about what goes on inside those front doors the better decision you can make when the time comes.

I had amazing parents. They were the best and I want to give them the best now that they can not take care of themselves. It took me a while to realize that me trying to do it all was NOT the best they could have. One exhausted frustrated human being can never do as much as a caring staff with fresh faces every 8 hours and an extensive auxillary staff to help out. I can't provide the activities, food, social interaction, encouragement, and caring that an activity director, chef, social worker, care manager, 3 med techs, and 3 caregivers can give. That's how many people had direct contact with Mom and Dad in a day. That's 10 to 1!!! Nope, I am not super woman. You just have to pick the right facility when the time comes.

Be aware of yourself, not just your parents. You don't have to give up your life to give them good care. They would not want you to do that. If you think you are burned out then you were burned out long ago. Yet I do know how you feel... been there

So again, welcome to the forum. It's the best place!!! I have found more encouragement, empathy, good advice, and the occassional straight talk when I needed it. Everyone here has been in your shoes. No, you are not alone now. Let me be the first to give you a towel. You can hang on to it, cry in it, clean up messes with it, hide under it, or pop whoever annoys you with it. It's the best friend a caregiver can have. Just know we don't let go of the other end So drag up a chair and a glass of your favorite beverage and type on!!

Love, Deb

 
Old 04-09-2009, 08:14 AM   #13
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Re: Sometimes I feel like a walking zombie caring for my parents

There are good nursing homes. It is just a matter of finding one. I have nothing but praise for the place my Mom stayed for 2.5 years. Cold Spring Hills, in Syosset NY. Wonderful caring facility with everything from rehab to Alzheimer units.

The must be something near you also.

Love,

Martha

 
Old 04-09-2009, 08:35 AM   #14
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Re: Sometimes I feel like a walking zombie caring for my parents

Everyone who searches for Nursing Homes or Assisted Living facilities must understand that its just the same as searching for a good quality caregiver for a child or a nursery school, etc.

Whether its in-home care that you search and interview people for, or a facility care -- due diligence has to be expended. And you get out of it what you are going to put into it. If you put them there, never visit, never check spontaneously, never talk nice to staff, never send flowers or treats for the caregivers occasionally, they will be put in a room and technically forgotten about.

Just like if you didn't visit nursery schools spontaneously or come home and check on an in-house caregiver spontaneously -- you are leaving yourselves open to a whole heap of trouble.

Not trusting my mother, my husband had a job that allowed him to be in and out all different times of the day. So she knew not to physically abuse my kids like she did me. But we did tell her that she can lkightly slap their hand or spank them on their butt if they mis-behaved or was in a position to hurt themselves or others. We told her no hair pulling, face slapping, or using anything to hit them with. and my husband's ability to check during the day until they were old enough to go to nursery school was a good thing.

My son (first born) went into nursery school at the age of 2 1/2 only because my parents loved having him around but he went to school only 3 days a weel so they could take long weekends away if they wanted. It just took him longer to adjust with the in and out thing.

My daughter was in nursery school at the age of 1 year because she required mroe care than my mother was able to give her.

So whether its your kids or your parents -- investigate, talk, talk, talk to everyone (staff and other residents and families of those residence).
and once placed, make sure you are a presence or others as much as possible. Be kind and gracious to the caregivers, file formal complaints on those not doing their jobs and you will be able to find quality anywhere.

CaringSister54

 
Old 04-09-2009, 10:03 PM   #15
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Re: Sometimes I feel like a walking zombie caring for my parents

Hi CaringSister!

My goodness you have been through a lot and thank God that you were able to pull yourself through it. You are a strong and sweet person and I thank God for directing me to this site. But I must ask about costs of these homes....is it monthly? weekly?....do these facilities have a patient's social security checks directly submitted to them?

Janaye

 
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