Why does dementia seem to take over not only the patients life, but loved ones around also?

Yes, to your first sentence. They'll unwillingly or unknowingly pull you down with them. Therapy, self care, respite care is imminent. When the plane's going down, put the oxygen on yourself first. AND no one can take advantage of you unless you LET them. Let's make sure too that we vote properly so that the elderly are not forsaken over the abuse of people who don't work/pay taxes. Some states are doing drug checks as employers do. With children on welfare being taught not to work but to accept welfare, we need to make sure we vote properly so that they get help at an early age. When we know better we do better. Good luck to you, and get help for your Mom. She doesn't understand, but your little boy will remember the memories of your getting help, and this in itself is a good lesson for him to learn. Don't wait til you become sick to say: "I should have hired more help". Take care and a big hug.

I can not stress this enough.... you will have to MAKE time for yourself and your family, you will not GET that time.... now is the time for you to start having some back up, to plan some time away knowing she will be well taken care of.... I am so burned out, I can't think straight most of the time... am planning changes in my life and have to follow thru, I am lost in Caregiver Never Never Land.... please take care of yourself... all the love in the world for your mom will not replace the energy it takes to do this job.... you are in my prayers...

Because the person suffering from dementia is now defenseless and has no "voice" so any family or loved one has to become that person's advocate, and they have to do so 24/7.....no different than having a 2 day old baby. Luckily for most of us, our babies at least slept. I have had preemie twins, one with CP, a paralyzed father, a husband who had a heart attack and 5 knee surgeries and a mini stroke....and now those events all seem like a walk in the park compared witnessing what my poor mother has to endure thanks to dementia.

Amen to the statement kitty1854 said. She is so right. And ladee was right on the money too. Please make time for yourself and family now while you aren't burned out. It crucial!!!

I so understand and yes somedays you just want to scream, I have been taking care of my mom with dementia for 6 years but I do it because I love her, many hugs and prayers for you

Sigh, I will have to agree with ladee. My Mom has been in a nursing home for over 2 1/2 years. She has other health issues besides dementia. I was unable to care for her 24/7! It would have KILLED me to say the least. I have a full plate as it is. My husband was diagnosed with Parkinson's disease 2 years back. Now as far as she gave me life,yes ,but I am sure if she were not in this state she would not think I should give up my life. I would be no good to her or my husband if I did. TAKE TIME FOR YOU AND BREATH!

Wow!! So many great ideas and suggestions. I have already gone through Alzheimers with my Uncle, Cancer with my Mom and Pneumonia with my Father (all
three are now passed on), we(my husband and I) are now dealing with his mother who along with cancer has paranoid delusions. She is in a wonderful care facility and is getting wonderful care, but we are the ones helping her and dealing with family that is not supportive and will call and yell at my husband and tell him that they hate him (it is sad as they are his older brothers who live in another state). It is stressfull most of the time, but as I was told years ago by a doctor, if you dont
take care of yourself too, you will crash and burn and not be able to help your loved
one!!! I am still learning how to do this and not to be a "super Woman". Did I mention that we also have our own business and are trying to find time to work???Any suggestions will be greatly appreciated!!!!
Thanks

I have been my husband's caregiver for some time, with some help in-home and daycare some days. I am now getting to the point where his delusions and the physical strain of caring for him are getting to me. I think we all reach a point when we say, I can't do this any more. Now I have to decide whether I get more help in-home so I can do some things and have a life, or send him to a foster home and visit as often as I can. We have to decide when the balance tips between caring for the LO and caring for ourselves. It will be very wrenching when I have to send him away, but I have heard too many people say how they wish they had done it sooner, because then the LO is well cared for, you can live your own life but be a part of theirs in a more joyful way.

I too am taking care of my husband who has alzheimers. I am so depressed I just want to go away and hide from all this. I love him with all my heart but I feel so alone. I just don't seem to care for anything these days even myself. Just getting a bath is stress for me. Don't care if i do or don't care if I don't. When I read from others about how long they have been taking care of their LO it blows me away to think that I may have years to go. I do have hospice coming in to help but I still feel like a prisoner in my own home. I do not get support from his family, oh, they drop by for a brief visit, I think just so they can say, I visited him today to make it look good on their part but they never say they will come stay for a while so I can get out of here sometimes. Reading others comments reassures me that I am not alone. I reallly look forward to your advice.

Yeah, his kids said they would help, but they don't even phone much, and he's starting to forget their names. I've prodded, but I figure I'm on my own to get through this, so I'm doing all I can to get help and get out of the house sometimes. Just arranged for more in-home care so I can maybe go to the beach for a day -you just gotta do what you gotta do to maintain your own sanity.

Same with my son . Seems to only call when he needs something. I have kept all 3 of his kids since they were born. Carried them back and forth to preschool at our church and even paid the monthly fee for all 3 of them and now that I am not in a position to do that he has just vanished into thin air. Always busy with something else. I just told my sister last nite that I feel so trapped in this house and you know what here answer was, "Well you are" how is that for offering to help out. I have to make some time for myself or I feel like I am going to go off the deep end. Thanks for your support

Dementia and Alzheimer's are the two diseases that are all consuming to a caregiver. It seems that because of the downward mental spiral we never get time to sit back and relax. After my husband died in 2005 I've lived with my parents on and off since then. (There is a very long story behind this, one not to be told here). Anyway, I've been watching my Mom decline and it is not an easy thing to watch. In fact, in March 2011 I went on a trip back to AZ (where I had been living for 10 years. I was supposed to be gone for 3 weeks, but I stayed for 9 months. I had burned out because of her constant picking, complaining, and general nasty attitude. I returned to PA in November re-charged and mentally prepared to stay till the end of all this. It is all consuming. I must watch her constantly, pick up her trails, dispense her medications (they are locked in my room), and listen to her constant bickering attitude. Some days are better than others. Today was a good day and I spent most of it doing maintenance work outside spraying weeds and planting hanging baskets. But most of my time is spent either with her, or locked in my room so she won't come after me (hopefully). I also watch over my Dad who is in mostly good health at the moment. But it got really dicey when he got a C-Diff infection back in Feb, was in the hospital for 9 days and I spent all of my time running back and forth to the hospital to feed him (he would not let hospital staff feed him) and then caring for my Mother on top of that. I about went out of my mind. My siblings finally recognized that I was here doing everything and have kinda stepped up (they both visit once a week for a couple of hours).The older of my two little brothers wants my parents to sell the house and move into a progressive care facility which I totally disagree with. I don't know what the other two sibs opinion is.

Anyway, I guess you can tell just by what I've written that my life is consumed with caring for the two people that brought me into this world, and I'm committed to being here to make their leaving life as comfortable and within their control as possible.

We as a family are in the mist of trying to plan how all this is going to happen, but I'm in this for the long haul and am not going anywhere.

Yes it is an all consuming commitment to make especially if you have a career and children of your own to raise. Getting outside help if you are in that position is an absolute must. You will not be able to do this on your own. Find out if Lutheran Social Services, or other elder care organization is available in your area. There may be elder day care services available, and respite care as well. I'm in the process of getting my mom re-evaluated and trying to push for more medications to assist her memory and behavior problems.

Sorry I know this post is long, and I guess I just vented for the day here. This site is invaluable to me. Now I REALLY know that I'm not alone in this, and that I can ask a question and get wonderful answers and suggestions to help me through this struggle.

Bless you for making the commitment to take care of your Mom. Somewhere in her mind she knows and does appreciate everything you are and will be doing for her.

Be well, Sue

They might have given us life...but we didn't ask for it. My mother-in-law has lived with us for three years. She's now 93. I've known her for 18 years. We had a great rapport, no "mother-in-law" problems at all. Her husband died three years ago and she came to live with us. At first it was relatively easy, but she ever so slowly began to slip and she has now been diagnosed with severe dementia. My husband and I are ready to pop. Our living situation has become chaos, our once happy home (which we both considered our sanctuary from the daily grind) has turned into an insane asylum. Her constant repeating, forgetting, repeating, forgetting, complaining, whining, repeating and forgetting (you get the picture) has taken us to the breaking point. We are at the point where we no longer have a life of our own. We dread each day and there is no peace. Yes we love her...but that love is turning into resentment and frustration that is getting harder to manage each day. I've taken to spending a lot of time in the back yard just so I don't have to hear her voice. My husband is caught in the middle, he loves the memory of his mother (as do I) but he see's the effects it is having on the household and at this point it's self survival. So sorry, I know she didn't ask for this end, but we don't want her end to become the end of US! So we are look for a place for her. In America (unless you're wealthy or made plans for the future early on) there not many options that are humane. So we are torn and in despair about it. If it's not one thing it's another....either the insanity of living with her, or the guilt of putting her "somewhere". I must say that thankfully we have no children to torture. We are planning as best we can for our own end of life without having to take down everyone around us. I always felt that having children was basically a selfish act...now I'm sure of it.

Your mom's condition must NOT consume your life! My husband & I have been caring for my 88 yr old dad for the last 3 years with him living in our home for the last 6 months. We basically have had to give up our own lives. We can't do it any more. My health is declining from the stress. I'm choosing to care for myself & maintain my happy marriage of 33 years. Dad is moving out. I love my dad dearly but I love myself & my husband too. Do NOT choose your mom over your family! Do the best you can for her, but have your own life. I also cared for my bi-polar mother from the time I was 18 until she died when I was 43. I've started attending a caregiver support group & that's been such a help. We have no family here to help & moved 3 years ago to be near my dad. 2 months after we moved my husband was diagnosed with prostate cancer. He is ok now, but it was hard caring for my dad during my husband's treatment. You are a loving & caring daughter. I wish you the best.

Hello
The past many years I have been taking care of my mom. I didn't mind ever doing what I can for her because it was done with unconditional love. However, there did come a time where I was asked by my friend that she would help out. It was great to get away. I always felt nobody can do this better than me. When I broke my arm, my friend was there for both of us. Yes, if you come across anybody who can help you out, take it with grace and don't feel guilty about. It was hard at first, and it became easier. My friend was me when I wasn't there for my mom. It takes a special person to want to be with the elderly. P at yourselves on the back. I am grateful for what I can do. Take care of yourselves first! Stay strong.
equinox

I don't mean to sound bitter, I'm just plain tired care giving can wear you down before you know it. I say round up your resources and get all the help you can. It's not likely that someone will volunteer if they haven't as of now so don't expect any changes there. You have to make it as easy for yourself because the bottom line is You are the Care Giver, and you must care for yourself first. Do it without guilt or remorse and to heck with what the naysayers may say.

If you live in the Bay Area (Berkeley-Oakland-San Francisco), please contact me. Maybe I can offer some help for YOU!

I just hired some help. I truly feel guilty and my heart aches when I left for 3 hrs with my 13 yr old. I have not taken my daughter out for 1 yr now. I was hollering at my mom telling her it's because of her that I have no life I am truly sorry I said that to her. She cannot respond because she cannot talk anymore. What was I thinking? I hate myself for saying that to her. If my daughter said that to me I would give up and die for her. my mom is going to be 93. I love my mom and cry everyday thinking I will never be the same without her. I truly feel guilty for getting help. I told my mom I got help for my daughter and these ladies will watch her like I do. She understands, but I can't feel good about leaving her. I am very close to my mom and always will. I will never be the same without her

Never, EVER feel guilty for getting help. Your chance at respite will make you a better caregiver. I find I get more snippy with my husband when I am not rested or just after too many days in a row without help. You NEED help, you DESERVE help and a life of your own. That won't change your closeness with your mom, it will make you more able to be close without all the stress.

Dear Kathtj, thanks for replying to my post. It's hard for me, very hard. I actually left my mom with a caregiver that I just hired for the first time and although my husband was home, he told me the caregiver tried everything to keep my moms mind stimulated, looked at family pictures, books, took her outside with the walker. She really didn't leave her side which was good. The only problem is that my mom could not wake up on Sunday all day and all night to eat because she was exhausted. My mom will be 93 in 2 wks God willing, and wants to take a lot of naps but when she gets exhausted from the day before I know I'm in trouble the ec day. When she gets so exhausted I can't even get her up to eat r drink until about 2 days later when she slowly comes out of it. Nevertheless, I still felt very bad coming home after going out with my 13 yr old.

I thank you again for encouraging me to ge out guilt free. I am going to give it a try again but ot too soon.
M
I do want to ask you or anyone else that might ave a similar situation, do the elderly like in th 90s sleep alt the time and does their food and drink intake slow down as well. I am getting scared as I see my mom eat and drink less. I would like to know if anyone also purees food food for their love one and how they do it

Thanks again

yes, they take an lot of naps and don't eat much, I just lost my fatherinlaw, he was 92 and in good heath, he passed in his sleep, we all like to think they will live forever but God calls everyhome at some time, we are not prepared for this even though we think we are, much hugs and prayers

Sorry to hear of your loss. May his memory be eternal

My husband is in his mid-80s and is sleeping 12 hours a night plus naps during the day. I sometimes wonder how the heck he sleeps that much at night, but he seems to need it. I'm sure some of it medications -don't know what your mom is on-but some of it is the body just being worn out. My husband also eats less than before, tho he still likes a pretty good dinner. He does much better when it's stuff he really likes, which unfortunately are not too good for him, but I indulge him some and feed him healthy some. I think at 93, you tempt her with something she really likes and forget dietary issues. I do give my husband Fruit Fusion so he'll get some fruits and veggies in him, and there's the products like Ensure (which he can't really have because of his blood thinners). I think the whole idea is, your mom is winding down, and her sleep and diet show that. Maybe you can talk to the caregiver about doing just ONE stimulating activity a day and see how that goes. You need the time!

In the mean time my husband has had a nagging, hacking cough for going on three weeks which I picked up and it manifested itself in my lungs. I am wheezing and coughing, my head is stuffed to capacity and I'm weak. Sorry...but her ever so slow decline is taking us down with her. We're not good for anyone like this. We are taking steps to get her into a hospital today so she can be in the care of professionals. What will happen after that is anyone's guess, but we've been caring for her for over three years....we're done. She will be ninety-four in July, she doesn't want to be here anymore. She says is all the time. We are kinder to animals when they are at the end. We don't let them suffer on and on. Of course we love her, that has nothing to do with it. She wants to go...and I really don't want to hear any self righteous comments from anyone. We all have our limits, she's reached hers and so have we. No need to hang on any longer, time to let it go...it's the humane thing to do.

To Kathtj,
Thank you for the info. yes, I give my mom anything and everything she wants. It breaks my heart that she is not chewing, although everything is pureed, she keeps all the food in her mouth and cannot swallow anymore. Her wish is to never go to the hosp. And I have to abide by that, however, to see her not get nurishment is awful for her and I. I know if I take her into a hosp she will be placed with a feeding tube but she does not want that....that will kill her. She has the will to live and I believe that everything and everyone should be given the chance to continue. If there is a God, then my prayer for her would be to go in her sleep without pain nor suffering. My mother never has a bad bone in her body and cared for even her enemies. I never understood that. Her faith in God is unmeasurable. If there is such a place as heaven, then I know she will go there. She cannot tallk and moans alot because of that, not because she is in pain, but when she moans it's such a terrible feeling in my stomach I ask her to please stop. I can't imagine talking all your life, hearing your voice, saying I love you and then one day never to hear you voice again. I wish I could give her my voice. I keeping praying that I remain calm and patient with my mom as she was with me all my life. I know I will never be the same when she leaves me....never. But thank you for responding to my posts, I guess this happens to all of us one day or another. I still have a husband and a daughter with special needs whom I know will need my help more later than now. I guess that's my purpose in life.

Way too much self sacrificing is going on here... seems like you have the need to be needed more than anything else. But it's your life. I've been living with and caring for my mother-in-law for three years now. We had a very good relationship for seventeen years. At this point she is ready to go and reminds us of that fact every day. She also has trouble swallowing and is afraid of just about everything. She has degenerated into severe dementia and frankly, I'm over it. It is SO debilitating being around her that our relationship has become strained, our home, which was once our sanctuary from the insanity of the world, has become an insane asylum. My husband and I want to live our lives again while we still have good years left. Her time is almost done. And although it is difficult we are looking for a place for her and she knows it and is okay with it. The problem is she is not really sick...her mind is going. Her decline has been painfully slow and could go on for years yet. I don't have years to spend on helping her achieve her goal. My goal right now is to LIVE, not to DIE. My time will come and when it does I will not expect anyone to sacrifice themselves for me...I would never do that. If you love someone you set them free.

I've read that swallowing becomes difficult as the dementia worsens, but I've never heard what you do about it, other than a feeding tube, which I've read only speeds up the decline. My heart goes out to both medlaw and jackiebquick - I sometimes resent caring for my husband, but not too much yet, and I hate to think I will become angry about my role, but if that time comes, I will know I need more help. Medlaw, I've read that moaning might mean something like a urinary tract infection is giving the LO pain that we can't see the reason for. Could she be checked for such things? This is such a hard job - we all do our best but sometimes the disease is too much for us. Hang in there!

Hi Medlaw2, I think the first thing to do should be try to find out why your Mom isnt eatting. Our taste changes and medicines can definetly cause a decrease in appetite. My Mom eats mechanical food ( chopped very fine) my Dad's food is pureed at the Nursing Home but when I take him food from my home I just mash it or put it in the blender with a seasoned liquid depending on the food like chicken broth or sugar water for sweet potatoes. Will your Mom drink Boost shakes? There is a product used to thicken drinks also if swallowing is a problem.

Talking to her Doctor or Nurse should give you more direction for eatting ideas. And about the sleeping...that's all my 97 yr old Dad does anymore, barely eat and drink though he does drink liquids more than he will eat and he SLEEPS, SLEEPS, SLEEPS! I do worry sometimes but I try to pay close attention and learn some valueable lessons to pass for others.

I feel bad for talking harsh to my Parents sometimes but they can really push my "I'm on the edge" button. I would love to visit more than once a week but frankly, after I leave work I'm pretty tired then to go by and hear their complaining about the same ole things, I just can't do it and be of good company so I save what strength and good feelings that I have for me and those who can appreciate them.

I hope you make a practice of going out more often with your Daughter, please don't deprive her of you. Mom will be fine, sleep or on her way to sleep. Now is the time to make good memories with your Daughter for her future, you can't get yesterday back.

Best wishes to you.

Thank you Sumierc.for your reply. I get very nervous when I can't even arouse my mom to wake up. She usually does this after a day of excitement from one thing or another. each day after the deep sleep she wakes up a little bit more until she is totally alert. I remember when she was well in her 80's she would go to lie down on the couch and I would ask her if she was feeling well and her response was just let me rest for awhile and I'll be better and that's what she did. after that she would get up wash clothes, cook dinner and take her own bath. Those were the good ol days for her and I. I couldn't believe how just an 1/2 hr rest would give her energy . Now just having a house full of family with grandkids over makes her exhausted. You know...the truth is...I am in the medical profession since 1979 and I have seen life and death but it never affected me, but now with my mom and witnessing her fragile body each day and her not being able to talk breaks my heart and truthfully, I can't take it emotionally nor physically. I cry everyday seeing her struggle just eating or having no sounds come from her mouth. I wish I could give her my voice. I remember how many of my coworker would tell me..how can you be so close to your mom, because we're not. I could never understand that. I came from a very loving family and we were very close. My dad died in an accident in 1992 and I took my mom in ever since. I would have done that even if he was alive. Nevertheless, my mom loves us all and he lives for my daughter whom adopted 13 yrs ago. She has special needs and loves her grandmother with all her heart. My mother lives for her . I have asked family to help me more so I could, like you said to, be with my daughter more. it's important not only for her to be with me but I to be with her like I was with my mom. Thank you for explaining to me that the sleeping more is basically normal for the elderly. I am sure if I ever reach my moms age, God willing, I will be doing the exact same thing. thanks again

You are welcome Medlaw2. I had to smile when I read where your Mom gets exhausted after a visit with the Grands., I laugh because I get exhausted after having my Niece and Nephews...Grands and Great ones over! I think it's because I'm not used to having that much charged energy or that many people around. I can get a little grumpy and very tired so I can really understand your Mom.

On a lighter note, once the Nurses and my Mom were really startled by my Dad's "unresponsiveness" he wouldn't squeeze a hand, wink, open eyes, or anything on command. Then the Nurse tickled the bottom of his feet and he darn near kicked her hand off! He said as best and loud as he could...WHAT IS YOUR PROBLEM LEAVE ME ALONE! MARY (my Mom) TALKS TOO MUCH!!
I've seen him play sleep on Mom before, when she begins complaining and yacking off. ( I don't blame him!) lol

I visited my Parents today, took Dad one of his favs...cranberry sauce and a bottle of Fruit Punch flavored Crystal Light to go along with his lunch. It wasn't much but he LOVED it.

Also, when Dad was in Hospice Care, I was told I could bring him Ice cream and Milk shakes with Protein Powder just something he eat ( at the time he was refusing food and losing weight)

You sound like you are having a better day, I hope that you are but when it gets rough and scarry, you are not alone and God will help you thru. Stay on this website and so will we.

Blessings!