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    Old 12-22-2005, 12:50 PM   #1
    LuvMyLilDoggie
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    Question Your experience w/nh decision & your loved one's transition

    Please share your experience with those who are contemplating whether or not to place their loved one in assisted care or a nursing home.


    What made you decide that it was time to make the decision whether or not your loved one needed to leave home and go to assisted care or a nursing home?

    How did you feel about having to make that decision?

    How did your loved one react when approached with the decision or discussion of the possibility?

    When making the transition, what feelings were you experiencing? Your loved one?

    How was your loved one when they first entered assisted living or a nursing home? Was he/she happy, depressed, angry, lethargic, enthusiastic, etc...?

    How did your loved one adjust?


    I haven't experienced this yet but I thought it would be good to get the stories of those who have together for those who need to hear them.

    Love, Barb
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    Old 12-22-2005, 02:45 PM   #2
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    Re: Your experience w/nh decision & your loved one's transition

    What made you decide that it was time to make the decision whether or not your loved one needed to leave home and go to assisted care or a nursing home?
    A. Mom lived alone, her home had become incredibly messy, her refrigerator had molded food in it, the freezer items were not properly wrapped, she'd confused day/night and tried to leave the house at 11pm, incoming mail confused her, and she'd made a phone appointment with a stranger for him to come to the house to tell her about some product...and she'd try to drive her car. It was obvious that she'd be a danger to herself and others and would not have a safe diet if left at home alone. I chose an assisted living facility because I thought Mom would enjoy the social contacts. If she were at home with an aide, it would be too isolating (and I was too far away to make sure Mom was treated well by the aide). Oh, and I left her in her hometown so her older sister could still visit her.

    How did you feel about having to make that decision?
    A. Guilty, guilty guilty. I used stencils to paint the same design around Mom's bedroom at the ASL that I used in her bedroom at her home, I also stencilled her living room and kitchenette. That was working off the guilt!! This was before I knew about NO GUILT.

    How did your loved one react when approached with the decision or discussion of the possibility?
    A. She cried, I cried, we all cried. She said no, I said yes, because I need to know you are warm and safe and have good food to eat every day. She cried, I cried. I called my DH long distance and cried. She said I want to go home. I said, I know, but this has to be home for now. You can go home later. Inside myself, I added MAYBE. She was angry that I took her car away. I hugged her and told her she'd had 3 wrecks and her turn to drive was over. The car was locked inside her garage, I had the keys to everything with me in TX, and I'd told all of the nephews and cousins, and her mechanic NOT to get the car out for her!

    When making the transition, what feelings were you experiencing? Your loved one?
    A. Just the deep regret that I had to uproot Mom. The guilt that I was making her unhappy. I wanted my mother back. I wanted things to be like they had always been. I wanted my mom to rock me. It was hard to be the grown up. I cried a lot. My DH flew to come be with me. He was really worried about me.
    Mom was sad to leave her home, tho she tried to be nice as her great nephews moved her furniture.

    How was your loved one when they first entered assisted living or a nursing home? Was he/she happy, depressed, angry, lethargic, enthusiastic, etc...?
    A. Mom loved the attention. She loved arranging her new rooms with her things. She loved how sunny her apartment was and how pretty her rooms looked. She liked the good food. She wanted to go home. Her moods varied from sad to polite, to pleased, to sad. I stayed in the apartment and slept on the couch the first 2 nights but Mom slept well. She soon forgot to be sad.

    How did your loved one adjust?
    A. Mom did well enough partly because she soon forgot to be unhappy, partly because she had 3 friends who also lived there, and partly because her kitchenette allowed her to still have her older sister over for Sunday lunches of PB&Js, chips, and cookies. It seemed to me that she went downhill more quickly there, perhaps because she didn't have to try to make sense of things and do it all herself. I think it more likely that she was just at the point of a decline because the last month she was on her own was really scary for those of us watching.

    As I've said here before, it's all about keeping them safe and keeping others safe from their carelessness. You can make them happy with things that don't involve safely and good nutrition. Laugh and they'll laugh with you. Let them eat dessert first or have the food they love that their doctor took away!

    Ooof, what a walk down memory lane. It's so difficult. You'll make mistakes, but forgive yourself. You're in new territory and school did little to prepare you for it. Just do the best you can at that time. If you learn better later, do differently later, but don't kick yourself for what's already done.

    Hugs to all - Barbara

    Last edited by BarbaraH; 12-23-2005 at 06:03 AM.

     
    Old 12-22-2005, 03:48 PM   #3
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    Re: Your experience w/nh decision & your loved one's transition

    Here's how it worked out for us:

    1. The decision was made for us when Mom fell and broke her hip. At first everyone (but me) assumed she would recover and go home, but she never did, and had to stay in the NH.

    2.I would have wanted her to be in a NH before this .. so I was OK with it.

    3. Mom was still in so much pain, and having a bad reaction to one of her pain meds (causing loss of control of her hands!) that all we thought about was getting her reasonably well again. When she finally began to feel better, she wanted to go home. This lasted for 2 months. Now she hardly ever says anything about leaving; she accepts that that's where she has to be for now.

    Many people were sad that she had to be in a nursing home, and we wracked our brains to find a better solution: have 2 round the clock aides at home with her? etc. None of that was possible because she cannot climb stairs and walk at all without a walker, and only about 20 feet with a walker.

    Soon we realized that staying at home - even if we managed to get her upstairs into her room - meant total isolation from the others. Alone or with an aide, with a TV or radio on - seeing my brother and SIL once or twice a day - that would be her life. In the NH on the other hand there are lots of other people to talk to, she is taken in her wheelchair to meals and lots of social activites, and she seems quite happy there. It is amazing that she is actually content now. Her memory even seems to be improving. It is a good place for a person with massive memory problems - nothing has to be decided by her. Her life is regulated, she is safe, warm, dry, and comfortable.

    Mom is 97 years old and always hated the whole idea of a nursing home - but it is obviously the only solution in her present condition.

    I do not feel bad or guilty about it, but I miss her and wish she were able to be at home.

    I try not to have guilt feelings, but once in awhile I do think "maybe if I had stayed in NY with her in the old apartment, she wouldn't have fallen and broken her hip etc". It's nonsense, because she was more likely to fall in that building. Steep stairway, one flight up, handrail on one side only.

    No, it is the best and only place for her to be.

    What riles me is that the government agencies Medicare and Medicaid are not paying anything at this point and all Mom's money is going for the monthly fee ... and when it is all gone there is still a question as to whether or not Medicaid will take her ... it seems NY State has too many Medicaid recipients already....

    Martha

    Last edited by Martha H; 12-23-2005 at 05:50 AM. Reason: typos

     
    Old 12-23-2005, 12:47 AM   #4
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    Re: Your experience w/nh decision & your loved one's transition

    It seems to be us that answer these ones .. those who have, just have and just recently have dealt with these issues. Regardless what our answers and thoughts are, it's a DAMN hard decision to make, and being the carers that we are, creates a whole myriad of extra guilt issues. Why did it come to this? What happened that I couldn't cope? Denial, grief, anger .. yes, we go through all these emotions, but I will do my best in answering ......... ready?

    What made you decide that it was time to make the decision whether or not your loved one needed to leave home and go to assisted care or a nursing home? The decision was about to be taken from us legally if we didn't do something serious in keeping my charge safe. Battles at the Police Station because she had wandered in, battles with the Police because once again she had gone missing .. her abuse of alcohol and increasing incontinence, the lack of family assistance ... my anger and frustration and depression ..... oh just rack up the points and be done with it !

    How did you feel about having to make that decision? Horrible, but it had to be done. For her DIGNITY if nothing else. Her quality of life was poor. She wouldn't ALLOW me to help her and that in itself was creating bigger issues in itself. She would not and could not cope with simple daily requirements let alone decision making!!

    How did your loved one react when approached with the decision or discussion of the possibility? Well she was sorta shafted into respite care, which had been discussed with her and she gave the impression she knew exactly what was going on, but in reality didn't have a clue, so yeah .. it got somewhat ugly at the nursing home because they weren't coping with her and she had to be moved to a more secure facility. That in itself was an eye opener, because in my emotions of failure, I finally came up with the statement of "if the professionals can't cope with her, what makes me think I can?" ... it was a turning point for everybody.

    When making the transition, what feelings were you experiencing? Your loved one? Once she settled down and we all got over the immediate guilt of "OMG, I've dumped her in an establishment" my family realised that she was exactly where she should have been AGES ago. Daily decisions had been taken from her, and she was just left with remembering memories (with the albums I've made and photo's and things) creating new ones (!!) and singing and joining in in the activities. I haven't seen her so CONTENT with her life in a very long time. Immediate feelings for me was "I am a loser, I couldn't look after a little old lady" and "what are people going to think of me for dumping such a wonderful woman into a home?" and guilt, guilt, guilt ..........

    How was your loved one when they first entered assisted living or a nursing home? Was he/she happy, depressed, angry, lethargic, enthusiastic, etc...? WILD !! Agressive, spitting, hitting, kicking, punching at the nursing staff .. but it settled down once she went into the RIGHT place for her .. within 2 weeks ... she was a changed woman. She's been in there 3 months now and she knows its home. If she's taken home the wrong way, she get's cross and cranky ... (Lord help roadworks .... LOL)

    How did your loved one adjust? She's doing SWIMMINGLY ........ best decision we've ever been encouraged strongly to take LOL.

    Hope this helps.

     
    Old 12-23-2005, 02:24 AM   #5
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    Re: Your experience w/nh decision & your loved one's transition

    I have a sort of transitional response to this which may be of use.
    Just to recap, it is my DH's sister who has AD. I think she is stage 5 going on six, but every now and then she pulls a stage 4 out of the hat which is very disconcerting. She lives in same house she has lived in for 70 years, has supportive neighbours on both sides, we live five minutes away.

    None of the rest of the family live near, and none are actively involved (although a couple have been through this with their parents and understand).

    My DH feels it is ALL his responsibility. SIL gets an hour a day agency help (supposedly cleaning but more social interaction which is just as valuable). My DH (and me as backup) has been providing all other support - she cannot handle her finances; overspends and gets hysterical that she has no money - he needs to transfer funds at the same time making sure she has enough savings to cover upcoming costs. She has extensive medical and dental problems and needs to be accompanied to appointments otherwise we would never know what needs to be done to help her. She has not been able to cook (or 'compose' a meal) for two years. Left to her own devices she eats chocolate, bread and ice cream. My DH and I have been cooking nutritional meals and taking them over for years - now she is unable to heat them up - if we go around to do it for her more often than not she has just had two ice-creams and is not hungry.

    She buys vegetables and meat but they moulder in the fridge and we need to do daily 'use-by' checks.

    He is so wonderful to her - much like Martha's Bill, he knows instinctively how to keep her calm and happy. He buys her clothes, fulfills all her housing upkeep needs, entertains her, feeds her, and deals with all the difficult decisions that need to be made.


    Every now and then she confounds all experience and cooks a meal (although we often need to replace the pots she has burned).

    BUT she maintains that she is entirely capable of living by herself, and that no one else contributes.

    What made you decide that it was time to make the decision whether or not your loved one needed to leave home and go to assisted care or a nursing home?

    When my DH had a (possible) stroke last week. He called me from work and was unable to process language. I took him straight to the doctor and then into A & E. The whole time he was trying to communicate that he could not cope with looking after his sister any more. He is also seriously depressed. There was no way that she could remain at home without his support, or that I could look after him and her at the same time. So I organised some respite care to get us through.

    How did you feel about having to make that decision? The whole family thought that getting her into a few weeks respite care until we stabilised my DH would be good. We all know universal agreement in families is a rare thing, so I was glad of that. On the other hand, they all made the decision that 'something must be done' but nobody did anything. I felt that we were doing the right thing, but that I would be blamed for it afterwards. It would contribute to her deteriorisation, no doubt, and it was me doing it.

    How did your loved one react when approached with the decision or discussion of the possibility?
    After a few runs through of the what and why (and this was only a temporary stay), with no pressure whatsover, she agreed (quite rationally I thought). When the time came, however, she seriously disagreed and could see no way that she was dependent on anyone in living by herself. She became downright insulting about my DH (her brother) and said she didn't care what happened to him and that he never did anything for her (this after ten years of almost daily care).


    When making the transition, what feelings were you experiencing? Your loved one?
    The feelings I was experiencing were that I was sending her into a traumatic environment which would ruin her forever. Also, that if I didn't, my DH was going to die. In fact, the nursing home I managed to get her into was rather nice, and in an area she was familiar with.

    How was your loved one when they first entered assisted living or a nursing home? Was he/she happy, depressed, angry, lethargic, enthusiastic, etc...?

    At first she was fine, liked the garden. They maintained one-on-one contact with her for most of the afternoon. As soon as they stopped, she made a break for it and escaped - turned up at home an hour later.


    How did your loved one adjust?
    Well, she didn't. She maintains she is completely independent at home, when in fact she is 95% maintained by her brother. She would like a family member to come and look after her at home for the rest of her life, she is adament that she will never go into a home. Sadly, now that she has done a runner from a home, she wll be categorised as needing secure facilities next time.

    Happily, as a result of this and some of my other efforts, she will receive a lot more home help (not that she will be inclined to accept it).

    So, as I said, I think this is an example of a transition - much as we want her to be happy there comes a time when the cost or risk outweighs the benefits - and everybody else heads for the hills.

     
    Old 12-30-2005, 11:39 AM   #6
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    Re: Your experience w/nh decision & your loved one's transition

    Oops. Sorry. Forgot to say thank you for your responses. Whack me with a wet noodle!

    Your stories are very interesting and varied more than I thought.

    One more question:

    Given the knowledge that you have now having gone through this experience, is there anything that you would have done differently?

    Love, Barb
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    Old 01-03-2006, 07:01 PM   #7
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    Re: Your experience w/nh decision & your loved one's transition

    What made you decide that it was time to make the decision whether or not your loved one needed to leave home and go to assisted care or a nursing home?

    I wanted my Dad in a nursing home, but my Mom wanted him home and she started having health problems from stress. I planned to move them both into assisted living, but my Dad became so paranoid he could have been dangerous, and there was no way my Mom could deal with him. After another trip to the psych ward, Dr.'s recommended that he be placed. My Mom wound up in a Sr. Apartment near the nursing home, and my Dad went into the nursing home.

    How did you feel about having to make that decision?

    I was sad to see my parents lives change so much, they weren't comfortable being separated, but the first night my Dad was in the nursing home was the first good night's sleep I had in months.

    My Mom was relieved she didn't have to be responsible for the decision. It needed to be made, but she couldn't make it.

    How did your loved one react when approached with the decision or discussion of the possibility?

    My Dad was willing to go to the Assisted Living apartment. When he was moved to the nursing home he thought that's where he was. As my Mom could come visit he seemed Ok.

    When making the transition, what feelings were you experiencing? Your loved one?
    I was feeling guilty that I hadn't done this sooner. Both of my parents were in an impossible situation at home.

    How was your loved one when they first entered assisted living or a nursing home? Was he/she happy, depressed, angry, lethargic, enthusiastic, etc...?

    Initially he was depressed - and pretty heavily medicated. Over 3 years he actually seemed to improve mentally, and wound up on just a mild anti depressant. Not having anything to worry about, he wasn't paranoid anymore. Recently he has had several heart attacks - but he keeps hanging in there. His mental state has really gone downhill the last 2 months.

    How did your loved one adjust?

    Until his health began to fail- he seemed to be OK, he could actually watch a ball game on TV, talk with some fellow patients at dinner, attend exercise class and look in the windows at the children's day care center in the nursing home. He told me not to worry about him, that he was doing fine here and they take good care of him.

    What would I have done differently?
    Gotten my head out of the sand sooner. The signs that there were serious problems were there, but I went through "He's old and set in his ways, he's always been like that, he's just stubborn, don't upset him...." for far too long.

     
    Old 01-03-2006, 07:04 PM   #8
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    Re: Your experience w/nh decision & your loved one's transition

    What made you decide that it was time to make the decision whether or not your loved one needed to leave home and go to assisted care or a nursing home?

    I wanted my Dad in a nursing home, but my Mom wanted him home and she started having health problems from stress. I planned to move them both into assisted living, but my Dad became so paranoid he could have been dangerous, and there was no way my Mom could deal with him. After another trip to the psych ward, Dr.'s recommended that he be placed. My Mom wound up in a Sr. Apartment near the nursing home, and my Dad went into the nursing home.

    How did you feel about having to make that decision?

    I was sad to see my parents lives change so much, they weren't comfortable being separated, but the first night my Dad was in the nursing home was the first good night's sleep I had in months.

    My Mom was relieved she didn't have to be responsible for the decision. It needed to be made, but she couldn't make it.

    How did your loved one react when approached with the decision or discussion of the possibility?

    My Dad was willing to go to the Assisted Living apartment. When he was moved to the nursing home he thought that's where he was. As my Mom could come visit he seemed Ok.

    When making the transition, what feelings were you experiencing? Your loved one?
    I was feeling guilty that I hadn't done this sooner. Both of my parents were in an impossible situation at home.

    How was your loved one when they first entered assisted living or a nursing home? Was he/she happy, depressed, angry, lethargic, enthusiastic, etc...?

    Initially he was depressed - and pretty heavily medicated. Over 3 years he actually seemed to improve mentally, and wound up on just a mild anti depressant. Not having anything to worry about, he wasn't paranoid anymore. Recently he has had several heart attacks - but he keeps hanging in there. His mental state has really gone downhill the last 2 months.

    How did your loved one adjust?

    Until his health began to fail- he seemed to be OK, he could actually watch a ball game on TV, talk with some fellow patients at dinner, attend exercise class and look in the windows at the children's day care center in the nursing home. He told me not to worry about him, that he was doing fine here and they take good care of him.

    What would I have done differently?
    Gotten my head out of the sand sooner. The signs that there were serious problems were there, but I went through "He's old and set in his ways, he's always been like that, he's just stubborn, don't upset him...." for far too long.

     
    Old 01-04-2006, 10:41 AM   #9
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    Re: Your experience w/nh decision & your loved one's transition

    Thank you! I must say I'm pleasantly surprised at the positive responses. I know that when the time comes for my dad, I'll re-read this thread and it will give me strength and confidence. I only hope that others will benefit from this also.

    Love, Barb
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    Old 01-06-2006, 05:59 AM   #10
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    Re: Your experience w/nh decision & your loved one's transition

    What made you decide that it was time to make the decision whether or not your loved one needed to leave home and go to assisted care or a nursing home?
    My father-in-law had been living alone for about one year after his wife's death. We had arranged meals on wheels - but when I would arrive in the evening, I would find he hadn't eaten much of anything. His short term memory was completely gone. His judgement was impaired. He needed help with daily activities. We (husband and I; husband was only child) were wearing out. His overall health was on a definite decline. When he was diagnosed with a condition needing surgery, we talked to him about the possibility that he would need to live somewhere else with assistance afterwards.

    How did you feel about having to make that decision?
    Relieved that he would be safer, have more company, and we would not be his only support system.

    How did your loved one react when approached with the decision or discussion of the possibility?
    Unbelievably well. He asked several questions and was mainly concerned about being able to have his own room with his own things and being able to be alone when he wanted to and be with people when he wanted to.

    When making the transition, what feelings were you experiencing? Your loved one?
    Because he responded so well, it made it easy for us. He had surgery for an abdominal aortic anneurysm and went from the hospital to rehab and then from rehab to assisted living. (He recuperated very quickly from the surgery -and I truly believe it's because he didn't remember that he had just undergone surgery so he didn't dwell on the pain, etc.!)

    How was your loved one when they first entered assisted living or a nursing home? Was he/she happy, depressed, angry, lethargic, enthusiastic, etc...?
    I would say he was very accepting.

    How did your loved one adjust?
    The assisted living facility was wonderful and he quickly bloomed with others to talk to and tell his jokes (over and over and over and over and over and...). My husband and I talked about the fact that it didn't matter that he was telling the same stories because those listening were also suffering from AD and they didn't remember they'd heard it a few seconds before! I would say that his quality of life was greatly improved by the assisted living arrangement. We just couldn't provide the support that he got there. Our visits became much more enjoyable because we weren't worn out by caring for all his needs.

    What would I have done differently?
    Get a digital camcorder and record him telling his jokes and stories - the ones we heard a thousand times. I'd give anything to be able to play it back and see him telling me those stories again. He was a charming man with a twinkle in his eye. His heart gave out before the AD got bad.

     
    Old 01-07-2006, 08:46 PM   #11
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    Re: Your experience w/nh decision & your loved one's transition

    Now why didn't I think of a camcorder? What a great idea! I had a camcorder years ago and actually got a shot of my mom! She was EXTREMELY camera shy but I got her while she was engaged in heavy conversation at my son's first birthday party. Little did I know that she would pass on three years later and that tape would be the only recording to remember her voice and manurisms (sp?) by. I so treasure that.

    Thank you so much!

    Love, Barb
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    Last edited by LuvMyLilDoggie; 01-07-2006 at 08:47 PM.

     
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