My mom is in an Assisted Living/nursing home which is very nice, only about 8 patients so far on the nursing home side. Maybe 3 or 4 have demenita/Alzheimers.The place is clean, food is good & the care is a little questionable at times but not serious. My mom from day one has always asked if she could come home. Sometimes she thinks she in there because she was bad. She lived with us for 22yrs. before I had to get help. I was her only caregiver & I just couldn't do it anymore. I feel so guilty after I come home from visiting her, that I am so tempted to take her home. I know she needs 24/7 care & needs to be assisted now to do most daily activities. She has always had very good eye sight, but now she has a problem with depth perception & needs help walking. She keeps saying that she hasn't seen Mary in a very long time. I tell her I'm Mary but 2 mins. later she'll say the same thing. I could write a book about what's going on with her & how her illness is progressing at a faster rate.I can't seem to get it in my head that she is where she needs to be & it is eating me up inside.I just need someone to help me through some of this, no one seems to understand.

Your post is the second one I have read lately that sounded so much like me. I read your entry to my husband, and he said, "that's you." I was about to go to bed, but I wanted just to take a minute and tell you I understand and I know there are tons of others on the site who do. I, too, have wanted to bring my mom home so many times thinking I know I can do it again, and my mom only lived with us for one year--not 22. I can only imagine how hard it would be after 22 years of taking care of your mom. I have helped my mom forever, but she lived in her own home up until about 2-1/2 years ago.

It sounds to me like your mom is in a great place and on some level you know it, but the guilt can be unbearable sometimes. Sometimes, it makes me feel better to think that if I brought my mother back to my home that she would still more than likely say she still "wanted to go home." It sounds like your mom might do the same. If she doesn't recognize you now and repeats herself so often, she probably would not "know" she was actually back home with you. That's just my guess. I'm no expert--just a daugther.

I did want you to know I felt your pain when I read your post and do understand. Take care and hang in there!!!!!!!

Lura I know how you are feeling. After visiting my Mom I wonder how I could bring her to live with me.The reality is that I can't but it's hard to see them unhappy. You just have to put one foot in front of the other and slog through, this is a unfair disease and it takes a toll on the caregivers emotionally. Hang in there and know that there are so many of us that feel for you and understand that you are doing all you can for your Mom. She is where she needs to be to have the level of care she requires at this point.

Thank you so much Julia. It seems we are in the same situation. I didn't mean to imply that I took care of my mom for 22yrs. we just lived in the same house, she lived in the downstairs apt. My mom started getting demenita about 4 yrs. ago.I was taking care of her for 2 of those yrs, before I had to put her in assisted living.When we first put her in there I thought I would maybe take her home on weekends or in the middle of the week for a few days. But the way she reacted to being put in there I knew if I took her out & wouldn't be able to get her back in there. This was almost 3 yrs. ago. We had to take her out of that one home & put her in one with more care 2 yrs. ago, At first she was on the assisted living side, then about 8 months ago they had to move her to the other side. It's more like a nursing home but it's still called assisted living.It's not one of those nursing homes where people are just strapped to their beds or in wheelchairs. I go see her once a week but I come home so depressed that I'm sick for days. They just raised her rates another $500 this month, not because of the extra care but because they said expenses have gone up.My sister & I will have to pay this increase because my mom has almost no money left in her acct. My husband just retired so no extra money is coming in & we have house expenses. I might end up taking her back home in a few months because it's just not affordable.
I'm getting really sick inside. I had 2 knee replacements in the last 3 yrs.& my knees still ache. My mom & I were not close even though she lived downstairs from me. She always critized every thing I did. Her & my father were divorced & they both remarried. I had no relationship with my father, he passed away about 35 yrs ago. My step father passed 12 yrs. ago.All said, I hold no anger towards my mom, if I could change places with her I would.I just feel so helpless. I feel that deep inside her she thinks I'm doing wrong by her.I see to all her needs.I buy her nice clothes even pay over $100 a month so they do her hair. I know if I take her home I will definately have a complete breakdown. Sorry for carrying on & on & I probably mixed up my words but I am just so upset.
,

Lura,
Just a couple of thoughts.

First, it sounds like your Mom's funds are running out and she is alone from a tax standpoint. That may mean that she qualifies for Medicaid. That is important for you to check rather than assuming that you and your sister have to come up with all the funds to care for her.

Secondly, I speak from my own experience. My wife is age 60 and is now in an Alz Assisted Living Facilitty. After five years of care for her at home and working full time, I had to place her in full time care. Now she is at the beginning of Stage 7. I found that after a couple of months, I was able to bring her home for visits. It is never clear that she knows she lived in this home for 14 years with me. But she is very comfortable here at our home. She will visit for several hours, sitting in the sunroom, being near me, wandering around the house, and having a meal together. Because she can not connect any time or remember even a minute ago, when she leaves the house to return to the Alz Facility, she does not know that she has been "at home."

Maybe it is possible for you to bring your Mom home for a visit once. If she can't remember, this may help you realize that bringing her home to stay would not add quality to her life, would not satisfy this inner desire to "go home" wherever that is, and would probably be so difficult on you that you could lose your health.

Just some thoughts. I understand the sense of loss, more than any words can say. After 39 years of having a true partner in life, it is terribly lonely to live at home alone. I visit her every day, usually in the evenings when I have finished my day's work. I have to travel with my work, and miss her so much when I am away and can't visit. The care facility is the only true answer for me. Of course for me, Medicaid is not possible because our income is combined. It is a terrible burden when the financial and emotional are added. Fortunately for me, I have incredible family and friend support, both emotionally and financially. I will make it. I trust you will too.

God be with you and all our fellow caregivers.
Bill

Thank you so much for the encouragement Bill. I know if mom came home she probably wouldn't remember this was where she lived. The problem also would be her eye sight. She needs someone to guide her when walking & I have steps to walk into the house & once inside some more steps. She might still say she wants to come home, even if she's here. She remembers when my kids were little & keeps telling me she'll watch them for me. When they go to see her with their kids, she doesn't really know them.Your wife is sooooo young to have this illness & I'm sorry that you are losing her mentally so soon. My mom is 82 yrs. old. You all are truly a God send to me. Thank you for sharing,I just wish my mom could laugh again & be in any happier place in her mind. She's so depressed & just looking at her sitting there when I go to visit, tears me up. I feel like I just deserted her & left her with strangers. She really has no one to talk to there, as her conversation is so limited....God bless everyone of you.Please feel free to email me at any time. It's more of a help that I can even put into words.

Lura,

Sounds like you got some good advice from Bill. There are two gentleman at the Asst Liv facility where my mother is who have wives who visit daily. There is also a blind lady who lives there. The other day, I brought my mom out of her room to eat, and we sat with the little lady who was blind (with Alzheimer's). It was so pitiful. She would cry and say she didn't know where she was and had no friends. (She has been there about a year.) I would tell her that my mother and I were friends, and we would make sure she got back to her room, etc. I realized how horrible it must be to be blind AND have dementia. She claimed her family didn't know where she was, but her son and daughter-in-law visit daily. I know it tears her son up every day when he visits. There are so people who are going thru this every day. Sometime, my head just feels heavy with the constant worry of it all.

By all means, take care of your physical health. Your mother for sure would not want you to lose your health over worrying about her.

It helps me to think that even though I have "abandoned" (in my mind) my mother to "the care of an institution," someday when she leaves this earth and her mind is whole again, she will realize I loved her and did the best I could. Does that make any sense at all??? If your mom could tell you, she would reassure you to take care of yourself and not worry so much about her.

I liked what Karen said above about putting one foot in front of the other and just slogging through. We all could use that advice!

Very delicate subject---
I am the primary care giver of my 77-year-old mother in law. I have become a student of caring for a person with Alzheimer’s (I refuse to say dementia)---we also have a 5 year old and a 7 year old, and my mother in laws' dog. She expresses suicide with even the mention of nursing home.
She has improved 1000% since she’s came to live with us last summer---I think a nursing home would snatch the life out her.
I can understand what you must feel seeing your mother like this and knowing that deep inside she knows she’s not HOME.
It would seem that a Christian society would insure that viable help was available for those who wish to keep their loved ones out of (old folks prisons).
I give you great big Plus for feeling bad and able to admit it---we all feel bad at the hopeless state of elderly care in this nation.
It will be the independent caregivers who have to revolutionize society into developing the means to provide full quality of life until death.
I would tell you not to give up---IF your mother wants to be home then she needs to be home---
If you want her home then she needs to be home.
I could be wrong but I feel their is never a matter of I can't do it---even if means restructuring your entire life---it could be the most rewarding experience ever. If you feel guilty about it---that feeling is real. Evaluate your feelings based on what you can or could do---not on what you can't do.
I know this may seem like brash advice---however I feel an honestly objective opinion is warranted.
I wish your family the greatest of providence---stay in REAL touch with your mother...it is not what you do or don't do, it is not what you say or don't say, it is how you make her feel.

I applaud you for being able to take care of your mother in law. If I were to do that I would have to sleep when she sleeps because my mom needs 24/7 care. Plus I watch 2 of my grandkids every day after school,also all day when the schools are closed.My husband just retired in Dec. & he worked very hard. We put 3 kids through college & is it now fair that he would have to be home all the time with me taking care of my mom? She is in a Christian Assisted living & they take good care of her except that they keep switching her clothes around with others.I do feel guilty but I also have others to think of plus I was getting very emotional & depressed 90% of the time.Maybe I am a bad person, but I never put myself first in my whole life.

You ARE NOT A BAD PERSON. We each have our own set of limitations--some include those who live with us and help us bear our burdens. I too have a husband who helped me care for my mother for a year and then retired. I do not feel it is fair for him in his retirement to have his whole life turned topsy-turvy over my mother. She told me before she got sick that she would never want to put any strain on the relationship I have with my husband. She was very adamant about that.

In my situaiton (and it sounds like in yours) you are doing the right thing. It is just my opinion, but I wanted to voice it. Hang in there and keep truding along and caring for your mother, the healthy members of your family, and yourself.

Thank you so much Julia for your understanding words. I tried, I really did....... I would never forgive myself if she got hurt or something happened to her in my care. She almost set the house on fire when she was home. She put a paper plate in the toaster oven....thank God I was only in the next room.

Lura, I do understand and feel your pain. I, too, feel guilt at moving my mom into a nursing home. (We tried assisted living; that lasted three days before she became aggressive and disruptive.)

My mother complains bitterly about being in a nursing home, but with her dementia, near blindness (she has glaucoma and macular degeneration), unsteady gait and poor hearing, she is not safe alone, despite what she believes. Mom is in one of the best facilities in the state, has a private room and I visit several days a week, but she talks about getting sick so she can "hurry up and die."

Caregiver guilt is part of this terrible illness.

My thoughts are with you.

Kasey

KaseyJ, Where is your Mom's nursing home? We are looking for one in Harford County and wondered if her's is near that area.

My mom's is on Long Island.They're are 8 people on the side where she's on & about 4 or 5 have Alzheimer's.When I saw her this week she was telling me she doesn't like the night time, she said she gets scared. I tried to reassure her that there is nothing to worry about, that God made the darkness as well as the light. I've never heard her say this before, it's so sad. I wish I could just take her hand & bring her home.

Lura,
I would like to say that all you have to do is think to yourself, If this were YOU with the disease and the situation were reversed, would you want your child to give up their live in order to keep you in their home, or would you want them to see that you were well cared for and be able to also live their live at the same time.
I would never say a child should place a parent and then forget them what I am saying is this: I care for my husband who has Severe Alzheimer disease, he is now in stage 7 and I would never in a million years want my daughter to do for me or for her father what I am doing. I would want to be placed, cared for in a good and decent way but never would I want my child to go through this and I am sure your mother would not want you to either.

Morgan, thank you so much & you are so right, I would not want to put my children through this heartache. I wish my mom could understand a tiny bit of how it's just ripping up my insides to feel so helpless as I do. My daughter in law thinks I'm a terrible person for not caring for my mom myself.She said she would never do that to her parents.Well she has siblings that could help, I don't. I think she's even made my grandkids feel that I'm mean. I've done nothing but doubt myself since she came down with this horrible illness.So again I thank you for your words of encouragement. May God bless you all.

Faith has kept me sane. I was not/am not an every Sunday churchgoer. But the more books I read and stories I hear and support groups I go to, I realize we will have guilt because we love them so much, but God loves them more. You have to give them back to God who brought your mom to you in the first place. He watches over her all the time so that you do not need to carry the burden. Try hard to remember that God wants you to make the most of your life. He will take your guilt away, if you let Him. "Four corners to my bed. Four angels around my head. One to watch, two to pray, and one to keep all fear away." Say a little prayer for you mom each day--give your worries to God, and find peace for yourself. You are the only one that can give yourself the peace you need. And God wants you to be at peace.

What a beautiful post....thank you so much. I am going to print out your words of wisdom. It sure was what I needed to hear. Thank you & may God bless you all.

We had to move my mom Wed. to a nursing home. The assisted living/nursing home was not giving her the professional help was is now needing.My husband, sister & I took her,she didn't even realize she was in a car. The last couple of weeks she seemed to be going downhill again, not even recognizing any of us & just realizing a little of who we were after we'd been with her for awhile. Anyway, we got to the nursing home & she was fine, didn't seem to know she was anywhere different.Later that afternoon she started getting nervous & very agitated..that night she didn't sleep at all. The night nurse told me she got her up from bed & had 1 on 1 time with her to try to calm her.They have her for the first time in a wheel chair as her sight is going & they don't want her to fall. This is upsetting her even more, she wants to get up & walk around.They had to put some kind of restraint in the wheel chair so she won't try to get up & fall.Yesterday she was calling for my step father which she really hasn't mentioned in the last 3 yrs. & she was also calling out for the police. Up until we moved her she was very docile, she would just fidget alot, never would cause any kind of disruption. I am getting so sick over seeing her like this, family members hardly come to see her anymore. It's just me, my husband & sister. My daughter tries to go once a month, my youngest son goes once in awhile & the oldest hardly ever.I brought a couple of my grandkids to see her, but they got upset & I don't think it is a good idea anymore. She really doesn't know who they are & this upsets them.All I do is cry & am getting so depressed. I want to take her home. I told my daughter in law what was going on with my mom this week & she started crying, meanwhile they haven't been to see her in almost a year. They live only 15 mins away from her.She thinks I should be taking care of her myself & that I am very mean in not doing it. I'm just so very tired, I wish I could trade places with mom.I hope God will forgive me for not being able to care for mom.

Did your mother get any joy in seeing the grandkids (not because they were hers but because they were children)? My mother loves children-- we stop strangers on the street and ask to admire their kids.

If she enjoys them, bring them but let them know that grandma is very old and she can't remember names, but that she loves to see them. Have them sing to her or play a game nearby or ???

There are some children's books about grandparents having Alzheimer's-- Perhaps others could recommend them.

Thank you so much for your suggestions....my mom just seems to detach herself at times from her surroundings. I will try to see about those books for the grandkids, it's so hard to explain to them why someone who used to play with them & enjoy them all the time, now doesn't know them

Lura
If you go to the FIND button (on purple bar at top of page), write in:
Helping Child to Understand and you'll find a wonderful post by Twice Blessed.

if you write in-- Two Books to Help Children, you'll find Bill and others have shared books they've found helpful.

YOur mother may be at the stage where she is detaching from life but see if there are still ways to give small moments of joy.

Thank you again for all your help. I ordered "Still Giving Kisses" tonight at your suggestion & I can't wait to read it. I will certainly also look for those children's books. May God bless you & thank you again for caring.

Lura,

After reading your post starting in April, I see that you have been through a lot. And you have been given some good advice so far from the other members of this community. As you may have seen after reading your fellow member’s posts, your feelings of pain and depression are sadly, a very normal part of caregiving for people with Alzheimer’s disease. Your mother seems to have moved on to a new and very difficult stage of Alzheimer’s that includes agitation, as well as new physical limitations that can complicate the care she needs. Nursing homes are designed to give 24 hour assistance to your loved one, and sometimes their means of providing that assistance is the best possibility. However, it is very common for all caregivers to question their decision to place their loved one in a care facility, especially when their loved one is agitated and displaying the declining symptoms of Alzheimer’s.

It has to be very frustrating and overwhelming to feel like you are handling the situation alone. Family members can often be a great source of support, but in many families, members handle the difficulty of the disease differently. Some may find it easier to not be involved, the “out of mind out of sight” concept. Others may be there very minimally so to not be hurt by the emotional pain the situation causes. Carrying all of the emotional stress of your mother’s care needs can feel quite burdening at times. It can be helpful to find a support group or close friends you can share your feelings with on a regular basis. To find an Alzheimer’s disease caregiver support group locate your local chapter at http://www.alz.org/apps/findus.asp. But most importantly you are not expected to be responsible for every aspect of your Mom’s care. The level of care your Mom requires at this time is too much for one person to handle, and that is completely normal.

Again, Lura, I am very sorry for the pain you are in. You are on an incredibly difficult journey. I hope that you continue to find the support and resources you need on our Online Communit