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My 86 y.o. mom has health issues and vascular dementia. We tried to let her stay in her apt. but she kept firing caregivers. We brought her to live with us and while my husband and I loved having her and she seemed to do well, every day (except one) for 2 months she asked to go home. When she started getting very agitated and threatening to do something drastic if she didn't go home, I took her home with nurses, case managers and caregivers all set up. This lasted less than a week. She called to fire the caregivers every day and also became agitated. I flew out and brought her to our home and then we put her in a nursing home 2 days later. She was not cooperative about this and was so upset they didn't let me visit for a week. Then everything was going well, she ate in dining hall with others, she wasn't mad at me anymore. Now after 2 months she is not eating, is down to 79# from 90# and may need tobe hospitalized because of dehydration. She cries that she misses me and now wants to live with us. My husband feels she should be in the nursing home and though I visit daily, sometimes twice a day, I feel incredibly guilty and am considering taking a leave of absence from ny job so I can take care of her at home. What should I do?

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guilty, you don't deserve the guilt and I can tell that you have absorbed it so deeply that now it is part of your identity for that to be your online name. BTW, thanks for the star for a comment that I made on this thread.

My mother would love to go home also, but she is not mobile enough nor is her home situation safe enough. Her dementia is so bad that she has thought for over a year now that she has only in the nursing home for 2 months. However, she has been there 2 1/2 years. I feel sorry for her, but I don't feel any guilt for putting her there following her hip surgery which she did not regain mobility from because she gave up and would not work with PT.

Guilt is deserved when morals and or laws are broken. You have done neither and your mother's care was definitely going beyond you. It sounds to me that you need to set some boundaries so that you can love with detachment. If your emotional life depends on how hers is doing, then you definitely need to detach and might need a therapist to help you. There is a very good book that I recommend to many on this site Emotional Blackmail When the People in Your Life Use Fear, Obligation, and Guilt to Manipulate You by Susan Forward. I wish you well.
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It's been a year and a half since Mom went to NH. Her assessment has dropped rapidly since being in there. I feel guilty because I wanted to keep her at home but I couldn't see the 24/7 care she needed. I wasn't able to care for her properly. She was fighting me on everything. It was taking tremendous energy to get through each day. Not a good situation for her or me. She dislikes it there immensley but she is safe and cared for by people who know what they are doing. It's sad they can't have that same care in thier own homes but it just isn't there. In there in her unit there are five staff members plus an RN. At home it was just me. She gets out a lot right now and she enjoys me sitting with her. She misses (and they all do ) the family closeness and we can feel their sadness. Mom has a sense of humour and says some funny things about being in there.and we have great laughs. Yesterday she said to me, "just look around, I'm doomed". She was referring to some of the others who are more advanced than she is.in the disease. Humour is good if you can find it.
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Three years ago (she was 82) we noticed Mom's memory failing. Six months later my sister and I kept her at our homes for about 1 year until we were unable to handle it. Due to lack of sleep (she has visitors and cannot sleep) and staying inside 24/7 to take care of her. She stayed confused and was also prone to falling. We placed her in assisted living but recently had to move her into a locked skilled care. My guilt is so tremendous - she cries and asks to come home with us - breaks my heart. Mom has always spread guilt but it is different now. I feel I deserve it. She stays confused, has sundowners and still has visitors thru the night. Will I ever be able to forgive myself?
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Warrior.

Thank you so much for your words of comfort and encouragement. Yes I am dealing with those emotions, frustration and anger toward my siblings for their lack of support and understanding. But like you say I am considering myself an only child focusing on Mom. If they want me back in their life they will need to give me a sincere apology and make some kind of ammends for the damage they have done with their false accusations and defamation of character.
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Very sorry for your loss. and thank you for your encouragement. I agree they seem to accept the staff better than their children. My mother likes all of her caregivers. She says they are great kids. lol. Yes the guilt is overwhelming because it is part of the grief we must go through. Grief counceling could help.
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My mother was in a nursing home here in Texas for 2 years, 5 months. She passed away a few days after Easter. I had to have her addmitted to hosp on Easter Sunday. She passed away the following tues. When we were in the Emergency room she was singing Easter Parade to my sister and I and 2 other emergency room patients. We had her memorial at the chapel in Nursing home and I cannot tell you how many people came up to me and told me how much Mom had touched their lives. She loved to sing and even though she would not tell me , she led sing alongs and tried to bring happiness to many of the other residents. She was on anti depressants which helped her dimentia alot but still begged to come back to live with me which tore me up. When I left the home she would go about her day visiting friends and joining in the activities. The staff were wonderful and loving to all the residents. It was a religeous based not for profit home and an excellent one. I would tell Mom to try to make some one there happy each day. Evidently she did. It's is hard to believe she is gone now but at 89, she was ready, she told me so many times. It is hard to back away and take care of yourself. The guilt factor is huge, but most times the employees know how to relate better and many times I think the resident is more willing to accept the friendship of nurse aids, and all the loving people there than their children. Visiting 2-3 times a day is too much. I visited once a week and Mom and her other volunteer visitors got used to our schedule. I would go more often if needed but letting her relate to the employees in the end, was the right thing. to do. We talked on the phone every day. She had her own phone so she could call long distance. I wish you all well, it is hard to rid ourselves of the guilt, but most of us have others who rely on us too. As women we can take a lot, I guess we are just made that way.
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I was amazed with how much a UTI can affect the elderly, you should have the doc's rule that out if they haven't done so. Also, the Excelon patch for dementia is prescribed for my mom, she thinks it's for pain and says she hasn't felt this good in yrs! I can definetly tell that the patch is working with her cognition.
It's tough, but you have your life, health and marriage to protect also; The stress of care giving can be over whelming. Do yourself a favor, make and maintain a close relationship with the NH staff, check out the meds, too much or not the right ones can be a problem and be sure there's no infection which can cause a lot of confusion, delusion, and anxiety.
I wish you so well, keep us posted on your progress. It can and will get better with a good plan, it can take time but it will get better.
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Yes I know there are side effects from Resperidal. I will check them out. Thankyou. I visit Mom two to three times a week. also but I don't have to travel far. When she first went in the NH I was going in every day and staying until supper time. Some days take her out for a drive. It was causing her to not settle in so I stayed away for two weeks and it helped. You sound totally burnt out! I hope you can get your strength back. I know what you mean about gaining weight. I have gained 15 pounds over this winter. But I am trying to pace myself now and walk for 20 minuts a day. At least it's a start.
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Ya, there is no 'safety net' (alternative care arrangement beside nursing home) for our mothers and for ourselves when we can't cope and hence they have to end up in nursing home. : ( My mom has been overdose b4 in the hospital till she was like zombie, can't even eat on her own or stand up straight cos they can't manage my mom. I protested because my mom ended up eating even plastic. Then they reduce to dose cos I fear that mom would suffer a fall. There are side effects of resperdone which U need to be wary of. U may want to check up side effects on the internet.

Am tryg to visit her 2-3 times a week. Very drained as each visit will take up at least 3 hours including travelling time. My mom has been diagnosed sick since 23 yrs ago but she could be sick and not diagnosed prior to that. Now, I am having problems coping even with packing my rooms and house. Problem functioning. Forcing myself to response to yr questions as I have same struggles as U and I would to force myself to think objectively. Really feel very down again and feel like cutting back my food intake. I swing from not really eating to eating so much that I put on 4 - 5kg, from 43 to 47- 48 kg.

I don't really know how to post my reply. Tried and failed the previous few days. Today managed to post my reply.
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Those questions are great. I could only answer maybe yes to 1c....I went in to visit my mother today and she was very heavily medicated. Just like a Zombie. And I know if she was home with me I would have to increase the Resperidol too to cope with her mood swings and paranoia. When my mother was living with me she fought me on going out, taking her pills, and eating. It was very tiring. I would be having my mother at home with me if I could only afford to hire Professional in home care around the clock. It's just way too much for one person. My sister had at least three people helping her and she couldn't do it. There is just no help available for people with Dementia to stay in their own homes for as long as they can before going in to a NH.
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Cgforgetmenot

Lack of support, understanding and cooperation from siblings is indeed very frustrating, anger provoking and irritating. They will 1 day reap what they sow. Their children will see what they do and model after them. They have to answer to their own conscience, if they have any. Even if their conscience doesn’t prick them, God will see what they do. I can identify with U cos my siblings' involvement is either absent or very ltd most of the times. I really need to learn to forgive them for our own mental health so that our emotional baggages are reduced. Caregiver's load is already heavy enough without other emotional baggages. Need to pretend that we are the only child of our parents if we already tried our best to get their involvement. We just do what we can and within our ability.
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Not4
I am trying to be rational because I want to help U although I still have v low emotional moments frequently. We are feel guilty when our demented parent’s health worsen whether they are with us or not with us.
Factors to consider if we should take our demented parents home :
1) What are the resources available from
a. Ourselves (money, time, energy level, physical – our own health, emotional and mental state)
b. our family of origin i.e. siblings (emotional, financially and moral support) and current family.
c. our community (daycare centres for demented patients, hospital’s respite care, support group)?
d. Friends (moral support)
2) Needs of our demented parents
a. Are we able to cope with their increasing needs as their health worsen?
3) What are the demented parent’s thoughts on nursing home and staying in own home? I would try to get my mom to share her thoughts in moments when she is more alert. But I would use discuss this matter with her pretending that it’s the case of my friend’s mom so that she can think more rationally.
4) Needs of yourself, your spouse and children. Can we juggle with our different roles?
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I also would like to add that I cry everyday and Mom has been in the NH since January. But that is because we are grieving and will be for a long time. My mother is mid stage also since 2005. She lived with me for 10 years and I miss not having her with me. I would like to have those days here again and that is what I'm grieving. The days when she was Mom. When Mom was living with me my sister and brother blames blamed me for her having Alzheimers. I was very alone and had feeling of inadequacy. I was trying to be heard and nobody was hearing me. So I was becoming very ill ( had symptoms of burnout and not capable of giving Mom proper care) so had to get my sister to take her or I would have had to get her doctor to arrange for NH care. Ended up that my sister had her one year and could no longer do it either. She could have been with me longer if my sister had have been working with me instead of against. But all things work for best in the long run. My sister soon found out what I was going through but has not yet apologized nor my brother so we are not friends. I am not going to allow them to just sweep it under the rug and not take responsibility for their behavior. Neither one of them have the word sorry in their vocabualry.
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warrior
Please get some medical help for your depression and therapy for other issues going on for you sound extremely lost in the F.O.G., i.e. Fear, Obligation and Guilt.
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My mother had a hard time adjusting to living in a nursing home but she knows she is safe and getting the care she needs. They are trained to deal with the behaviour and can have the meds adjusted as needed more quickly. She is not easy to handle with her mood swings and can be aggressive and they know how to deal with that, So we are really doing what they really need by letting them remain in the home with professionals. On the days she say she doesn't like it there it is because they are getting her to do things ( she may not want to do)like bathing and resting and taking her meds and eating and socializing. When she was at home she would become very stubborn and not want to do any of those things. She is accepting it better now it and looks great,eating good. She gets lots of visitors and gets a out a fair bit and that adds tto her happiness. We try to make her room homey for her also. There comes a point when they just no longer know what they want. They think they mught know but they don't. Hope this helps. Stay strong.
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I also feel very guilty putting my 88 yrs old demented mom in dementia nursing home since Nov 2010. I have been crying less often now; I think. I'm still teary and has emotional swing. I also don't feel like socialising. Used to cry daily. Very drained from caregiving. Feel like wanting to take her back but can't cope. Her body clock has reversed already; day becomes night and vice versa. Difficult to keep her alert in the day. She wakes up very often at night. My sleep also ended up disrupted and hence she was sent to nursing home. I have a no. of health issues as well. Mom has been sick with middle stage dementia since yr 2000. She is diagnosed with schziphrenia since 1987. I suspected that it was a wrong diagnosis & instead should be early onset of dementia. Reasons : she no longer has any schziphrenia symptoms for a no. of yrs already. Feeling unfilial with lots of self condemnation, self anger, guilt, lousy feeling of inadequacy. Pls help me as well from this vicious cycle of emotional turmoil. Social isolation, employment affected, mental, physical emotional depletion are also part and parcel of long term caregiving.
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Your story really helps me understand why it's best for Mom to be in the NH. That would be so scary. My mother has an ID bracelet and she tried to cut it off her wrist with a butcher knife when she was at my sisters. Then she tried to lock herself in her bedroom with a knife in the door,. She has a bad back and can hardly walk so we always thought that was good because she wouldn't walk very far. Mom threatened to go up the back field when she lived with my sister. She didn't like living in the country and I knew that when I told my sister to take her but I had no other choice.I didn't have any resourses for her care. and I was burnt out from doing it all alone. My siblings didn't know what I was going through and was blaming me for making Mom the way she was. So I didn't have any emotional support.from them but I did from my friends and children.
The wing Mom is on is a locked unit and she can go up and down the hallway or the dining room to eat or sit in the tv room. She can leave the unit if someone takes her. Most of the women in there are worse than she is so I don't know if she will make friends that easily. Thank you for sharing your story with me. It's very helpful.
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Food for Thought......
Keep in mind my Mom is physically able to do anything and constantly trying to go home!
I have real scenerios that may help you:
When Mom first needed 24/7 care due to her confusion and getting lost, she lived with my Boyfriend and myself
in a Lake community, the lake was directly across the street behind the house accross from mine. One night I had a feeling she was in wondering mode (her bed was on first floor) so I asked her if I could cuddle up with her thinking this would keep her from wanting to leave or at least if she did I would know. Well she waited until I was in LALA LAND climbed over me, opened the window climbed out(I had doors booby trapped) I woke to a phone call from the police 12:30 AM (well aware of her condition due to prior incidents). She was in her robe which was wet to her chest. The police told me the man across the street woke to his dog barking and he saw her in his back yard(lake front). She says to me very calmly, " I was walking home" (an hour drive thru mountain roads) "Oh and I was in a puddle thats why I am wet...it was a big puddle." She was in the lake and didn't know it. Thank GOD dogs!
She was in the lake but clueless about it and the distance of her house and all the dangers!
One day she climbed out window again trying to go home, she faked me out, knowing I would stop her, she acted like she was going to the bathroom closed the door and I was clueless. When I realized she took off I called police, it was maybe 10 minutes she was gone b4 I noticed. Then we search all over town I had joggers, dog walkers, kids playing outside, landscapers looking for her. After about 1 hour I started freaking out, then I thought I saw her but it was a woman who from behind looked like her, so I explained to her what was going on in hopes she'd seen Mom since she was raking her lawn and just then a woman pulls up to say hello to her, so the woman explains what I was doing there to the woman in the car and she says OMG she's at the library she thought she was in her home town library. How she found the library I'll never know but it is located right next to Police station. Thank God again!
I could go on n on with these storys but you should get the point I'm making. I must say that once Mom got used to the routine of the NH she accepted the change and with daily routine and stable unchanging environment she is alot less stressed. In fact she is so much happier that she dosen't have to be directed by me anymore. In fact at the NH she does what she wants, goes where she wants, and the staff cannot by law force her in anyway or give her zombie pills unless it is rightfully justified. The only thing they have to do is give meds needed for her best quality of life. Sometimes she tells me "I'm going out tonight" I say "oh ok have fun." In her mind she works there and the entertainment time is like a night out.
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Thank you. It does help to vent and to know other people are having the same feelings and how they are dealing with it. My next fear is that if Mom doesn't adjust to being there the Dr, will medicate her and she will be become like a Zombie. The ideal thing for her right now would be in he rhome environment with a lot of in home care. She has vascilar dementia , alzheimers, and some frontal lobe. She will be 82 this summer and lived with me the past 9 years and then with my sister one year before goingto the home in January. She was becoming very aggressive and hallicunating so I was not able to keep her.

When my sister took her to her place she hired a caregiver to come in three days a week to help but she still couldn't handle Mom. We went through a terrible ordeal of her accusing us of taking her clothes and refusing to take her meds. sometimes. it was very difficult.
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cgforgetmenot, you are not driving everyone crazy with your emotions. Keep writing and vent all you want.
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I too feel guilty about my mother being in a nursing home following a blood clot. I live with her and cared for her for over eight years. All along my plan has been for her to return to her home with caregivers during the day and me caring for her after work and on weekends. I need to make a decision regarding whether or not it is best to have her return or have her remain. The guilt is overwhelming. I don't get a lot of response from my sibling other than to advise on who or who not he believes should provide cares. I hope to make a good decision.
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I think I am driving everyone crazy with my emotions. I was a dovised to stay away from the residence for 1 to 2 weeks to give Mom time to adjust. I was going in every morning to help her with her makeip , Then she would ask me where are we going? I was taking her out too. Then she would want her purse. Then she would want her money. Just gave her more anxiety. This was stopping her from adjusting and I am getting emotionally caight up in he feelings of anger about being in there. I know she is safe and cared for. I went in one day and she had a stone face. Her face was totally expressionless..
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Sounds like she is where she is cared for and safe which safety sounded like it was an issue at home. Her vascular dementia will only continue to get worse. My mother has the same problem and often talks about wanting to go back to her home, but does not grasp why that reality is not possible. Plus, she refuses to cooperate with PT to help her walk after that broken hip, but complains that they don't do anything for her. Now she does not even want to be gotten out of bed to sit up for an hour or so.

I"m not a therapist, but if this guilt immobilizes you much more please go see a qualified therapist about it.

I don't now your age or how close you are to your own retirement, but considering that and today's economy, I would not a leave of absence from your job. You need a life, but you don't need to visit twice a day. Your responsible for her care and her safety, but you can't be responsible for how she feels because those are her feelings. If we let our own emotions go up and down according to how happy someone else is, then we will constantly live on a roller coaster.

My mom raised me to believe it was my main job in life to make her happy and to always put others before myself for I had no real self apart from her. That belief about destroyed my adult life.

Now, my main job as her adult son is to make sure she is cared for and safe. Sometimes that means having to stand up to my step-dad and he gets very angry over me having medical and durable POA, but he must deal with his feelings, plus he's a drunk and you can't reason with someone who is drunk. I never let the nursing home or my mom or step-dad know when I am coming so that I can see how the CNA's most of whom are experienced adults and the nurse is functioning.

I am sad that lhardebeck's only seen some of the worst NH, but in my county even the poorest NH operates better than the one she's talking about.
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cgforgetmenot This subject is one I had to deal with and currently dealing with. I transformed any guilty feelings into good energy and I use it to do whatever it takes to keep Mom, safe and comfortable and as healthy as she can be. That is all that it boils down to, it's the "big picture". When you are a child of a person with any type of dementia you have so many different issues to think about. It effects everyone in the family in extreme ways. I wish I could care for my Mom at home it is just not possible. I edjucated myself about everything, stages of dementia, medication, etc. Understanding is key... for example, some days my Mom asolutely freaks out when I call her Mom, (she knows me and my name,but I'm not her daughter) so I call her by her name pretend I was the one confused and she is Ok with that. I learned to go with the flow. Since she has been in the NH, I keep close attention to her behavior and her meds and basically everthing. She got pretty comfy there and accepted her new home because I think in all her confusion she knows shes safe. Change is not good, routine and familiar surroudings is best, the more change the more stress the more lost they feel. I have realized that her moods depend on time of day, and even minute to minute. Hope I helped I am here if u need me.
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I'm facing the exact same situation, My sister put my mother in a nursing home and she hates it. Very very depressed. Hates having lost her independence. She has alz. and has been there a month and not adjusting. It is heart breaking and don't know how to help her be happy. I have stopped going in and was advised to stay away for up to 2 weeks to let her adjust. I can't see it happening but they say she will. Most of the people in there are worse than she is and that makes it so hard for her to make friends. I did everything I could of to help her be happy. I took her out and that made things worse. Took her out too soon maybe. I love visitng her and seeing the other ladies. I took Mom for a manicure and she loved it . I will take her again in 2 weeks. She has a photo album and some knitting and a key board there. She gets a lot of visitors too and a boyfriend who takes her out once or twice a week, She has more going on for her than any of the other resisdents but she is still a very distraught woman. Very sad to see.
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Most States have an agency that you can call and report poor conditions.
Try to check that out. Yes, I know there are some really terrible places. When I was looking for an Assisted living home for mother , I came across a private house that sounded wonderful from their ad. When I went there It was "Terrible". The price was the same as the lovely Assist. Liv I eventually placed Mother in. I would not have put my worst enemy in it. I knew by looking at those residents they could not afford the price of the private home, and I bet they were on State or Fed. assistance and the owners were just raking in the dough. Also when the Pharmacy that the nursing home uses was over charging me I finally had enough and reported them to the State. (Texas). Then I changed her perscriptions to a local pharmacy rilght next door that was able to provide the packaging required. ( and , I am now shopping locally and can speak to a person that knows me) Now , I',m not saying anything will be done, but if you keep checking or look for advocates, you may be able to rectify some injustices.
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my daughter works for a hospices , she went to take care of a lady name mary at a NH . my daughter walked in and saw a young girl tryin to feed mary and was begin mean to her . mary told that girl u need to stop begin so mean to me . my daughter was shocked .
she told that girl she can go for that she will feed mary . girl left with an attidue , my daughter talke dto the head nurse and told her marys bed is broke . yeah we know is what head nurse said . then mary s daughter came in from out of state , mary filled her in about that young girl begin so mean to her . my daughter told her yes its true i walked in on it . mary s daughter went to the bathroom and bawled her eyes out . she couldnt do anything about it since she lived out of state and came to see her mother for short time .
mary cried and said this nursing home is so awful !! too many young girls 16 yrs old and has no respect for elders . and this woman is dying !!! to be treated like that .
my daughter is going to stand up for her and is going to speak to her boss about that . she needs a hospices bed now !
see thats why i dont like NH cuz i do see lots of young girls and theyre just so ungreatful and think she knows it all !
when u go home and u worry what s going on in there . i took dad out of that place in 2 weeks after he was in rehab , i didnt like what i was seeing .
make ell elders sit in wheelchair which is so uncomfertable . alot of em are sleeping with thier head down , no wonder thier neck hurts ! ahh enough of it ....
some would like it ifthey were able to get around and loves company well good for them . but for the ones that doesnt like to be around people they dont know and cries all the time . its only going to end thier life quicker ..
my other daughter said the NH drugs them elders up so much turn them in a zombie so they keep thier mouth shut .
wow what a way to live ...
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I also look forward to being with God-I am so glad my husbands salvation was in place -he was a beliver we have a great little church not a great number of members but such a supportive loving group and a fantastic pastor when we had my husbands Memorial service many people said they liked my church and one of my friends who is a neighbor is going to go with me probably tomarrow. I am sure my husband is so happy to be in the glory and presence of God-he was so unhappy for so many years with his poor health he really wanted to die and move on to eternity.
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With MIL she has macular degeneration so no more crocheting or doing her cross word puzzles anymore. They play the old timey music thru the halls where she lives, she likes that. I have gotten her a DVD player (the simplest one possible), but she can't remember how to work it most times. I have written in huge letters the instructions, but even IF she can see it, she won't remember in a few minutes. We brought all her photo albums with her when we moved her. But with the eye problem, it's really hard to see them.
She is pleasant, kind, and very grateful for everything we do for her. I personally try to take her out at least 3 or 4 times a week and go to a movie (which she can still see) or just run around doing dumb stuff. She likes that. She also goes to church with us every Sunday, and afterwards we come back to our house and I make a big breakfast/brunch for us. The one time my husband gets poached eggs during the week. He likes that. ha.
I, for the most part, like spending time with her, but it's ALWAYS nice to have her go back to 'the home' as she calls it. We thought and planned on building onto our house at one time, a separate apartment for her instead of asst. living. But that still wouldn't solve the problem of her not being alone when we were out of the house. She needed 24/7 care, so we went with asst. living. She falls a lot and has already broken her hip. This site has put into perspective my relationship with her, and someday my folks. It's all relative (no pun intended) I guess. What is torture for some, is a walk in the park for others. Either way, getting old sucks, and dying... well from the time we're born, we start to die. So knowing where we spend eternity is the only thing that makes this worth while, and gives a person anything to look forward to. At least I do.
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Does she have any old photo alblems you could go over with her also are there any activities she would be interested in doing or is there someelse who is lonely who would like a friend that she could visit with-she may very well want to just complain did she ever knit or crochet sometimes that comes back easily to someone do they show old movies there or have anyone in to sing the old songs. When my husband was in rehab a retired MD hardly knew his own name but knew every word to the old songs -I would just try things and then if it does not work nothing is lost.
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