My dad was diagnosed with Alz 4 years ago. He had a UTI recently and was found in the yard with his guitar, a q-tip and a handful of bic razors. Needless to say, I called 911 and he was hospitalized. From there is was put into rehab in a full-care facility for a month. Last week, we put him into an assisted living (locked down) facility. He is horribly unhappy and getting mean. He has packed up everything he owns and thinks he going home in a day or two. How do I deal with him blaming me for being placed where he is. He thinks he completely healthy. I don't know what stage he's in but I'd say moderate. They're telling me to stay away for a couple weeks but I don't want him to feel abandoned. Help me understand this please

My mom may have been further along when she was placed, but she packed daily for almost 4 months. I visited daily, but did not spend long. I found that the visits went better when I praised how well she had packed, and "helped her" to unpack and settle in" nightly, and stopped telling her that she didnt need to pack, or that she wasnt going home today. She still wants to go home (1+yrs later) and I assure her that she will go home "as soon as the house is ready". My mom also takes an antidepressant, and respiradol since she has good reasons to be unhappy (loss of home, husband, parents, control of her own life). It is a hard road, my best to you.

Lovemypapa,

One of the most difficult aspects of caregiving is the decision to move a loved one into a care facility. Caregivers, such as yourself, are often torn with guilt, and yet, are faced with the reality that they can no longer adequately provide the necessary care that the person with dementia needs.

Every family is unique, of course, so there's no single approach that works best in all situations. Typically, we would recommend that you visit as often as necessary to help your father feel as secure as possible in his new surroundings. This is probably what your gut instinct (and your conscience) are telling you, and that's fine. If you find, after a couple of weeks, that he's not adjusting well, it may be that you'll need to allow some time away from your father with the idea of helping him adjust to his new environment.

In terms of communication, my own personal preference would be for honesty. I can understand that sometimes, you may need to stretch the truth here and there to help him accept what's happening. But to the extent possible, I think it's important to tell him the truth (in relaying your thought processes) and not create any unrealistic expectations on his part, as this will only hinder his adjustment. This is also with the idea that, ideally, he'll be able to move on with his life, instead of dwelling on this one particular issue. If you'd like to speak further about this, please feel free to call us at 800-272-3900. Thanks for posting on our online forum.

Well, the people at the AL facility are telling me to stay away a week or two. That is so hard. My dad has everything packed and sitting in front of his door so you can hardly get into his room. When I visit, he is mad at me for placing him there and keeps telling me I'm breaking up the family. He forgets most things but he never forgets that I placed him there. He won't participate in anything at the home and stays in his room as much as they'll allow him to. I take him treats almost daily. He'll sit and eat them and hardly talk to me. He can tell you anything you want to know about WWII but he can't remember much else. I worry that he'll just give up and his health will decline and I'll feel like he would have been happy at home but my stepmother has been unable to care for him. She's 80 and he's so demanding that it's almost impossible to keep up with his demands. This whole thing started when he got a UTI at home and went into the hospital. From there, the dr. said he need assisted living. He blames me for all of this even though he won't believe me that he was in the hospital for 2 weeks and in rehab for 5 weeks. He thinks I'm lying. I think I need help.

I am sorry for your grief, and I know that you already feel guilty without dad trying to make you feel worse. You are doing your best for him. If he is unable and unwilling to participate in activities it may be worth having his MD evaluate him again. Depression can also accompany dementia and may respond to medication.

Lovemypapa,

It is very clear that your concerns and love for your father are motivating you to find help with this difficult situation. Many, if not all caregivers feel a sense of guilt after placing their loved one in a care facility. You are not alone. That decision is very complicated, and it comes with the all the feelings you are experiencing, all of which are very normal. It is even more difficult for caregivers that have loved ones who are not transitioning as easily as one may hope. It seems like almost every day you are faced with questioning the decision to place your father, this can cause high emotional strain. If there are thoughts of moving your father back in with your step-mother there are many things to keep in mind. At home care requires a lot of planning, not only for everyday, but for the future as well. Alzheimer’s disease is a progressive disease, which means your father’s condition will continue to change. Planning for the future includes planning for those changes. These changes are unpredictable; there are some commonalities but each person with dementia progresses differently.

Very commonly people with Alzheimer’s disease are not aware of their problems and changes. As the disease progresses they become incapable of knowing when and how they need care. That is why we need to support them, which you have been doing. You mentioned that when you try to explain to him why he is in the assisted living facility he does not believe you. Many times it is better to not reason with your loved one, because it could potentially confuse them and sometimes increase agitation. We do not realize how much we reason with the people around us, and knowing how to stop reasoning is a very challenging feat. Keep what you say to your father simple and concrete, try not to go into lengthy explanations. I am unclear how the conversations with your father proceed, but for example if when you visit him he immediately accuses of ruining his life, simply apologize and try to change the subject to something you know he finds pleasant, like you mentioned WWII. You may say something like “Dad, the doctor feels this is the best place for you.” Having a prepared response can help you when you are caught up in the moment. It may be helpful to call the contact center and role play some responses or practice how to talk with your father without reasoning.

Another symptom of Alzheimer’s disease is perseveration. Perseveration is when they become fixated on one topic, item, or moment. For example a person with Alzheimer’s disease may be fixated on checking for his/her keys. This person may continue to look for, and talk about his/her keys, even though he/she may not need keys or even have keys. Perseveration is a part of the cognitive impairment persons with Alzheimer’s disease experience. Your father may be perseverating on his move to the assisted living and is incapable of understanding your reasoning for his placement. This means he is very focused on this one thought and as a result of his disease he is unable to move on.

It is very important that you get the support you need as you battle through this emotionally intense and difficult time. There are support groups throughout the country and if you go to this link http://www.alz.org/apps/findus.asp and type in your zip code you can locate the closest Alzheimer’s Association chapter and connect with the local support groups.

I also recommend that you call our helpline and speak to a Care Consultant directly about these or any other concerns you have at 800-272-3900. What you are going through is very difficult. I hope that you can find the help you need. Thank you for using our Online Community, please continue to use this message board to find the support that you deserve.

Jaimie E.
Care Consultant
Alzheimer’s Association

How do you know when it's ok to take your father with alzheimer's out of the assisted living facility for an outing? My dad wants to go home constantly and I want to take him to visit his only living sister so bad but I'm scared.

Lovemypapa,

Like many aspects of Alzheimer’s disease there is not a set time to do certain tasks. However, there are things to keep mind when you make a decision. If your father is still fixated on going home, and you take him out of his new environment, it may disrupt the transition process. At this time, taking him out of the ALF may be lead to a false sense of hope that he can return home. Another very important piece to keep in mind is, what may happen after the visit when you return him to the facility. He could become agitated and refuse to go inside, and this could lead to him becoming combative and potentially jeopardize his placement.

Keep in mind that although taking him on an outing may be something you want him to do; he may be incapable at this point to understand the importance of his relationships with family or friends. Remember, after all his recent changes, it is important that your Dad reestablishes stability. Taking him out at this point may disrupt this process. If your Dad is asking about his sister a lot think of alternatives to an outing. Perhaps a telephone call would satisfy his need. Instead of bringing him to the activity and family, think about bringing the family and activity to him in his new home.

Also, you should contact the social worker at the ALF and see what kinds of activities there are in the facility that your father does not have to initiate. Often people with Alzheimer’s struggle with or are incapable of initiating activity. With guidance and direction your father may be able to increase his level of activity and begin to feel more comfortable in his new home. Asking the social work of potential programs that offer this service would be a good place to start.

Again, seriously think about joining a support group so you can have a place to take these very normal feelings and questions. The others in the support group can help you through your journey and give you guidance.

You have every right to be scared; this is new territory for you. And many caregivers face ambivalence when making decisions because they want what is best for their loved one. You are truly doing your best, and taking the steps in the right direction to find help.

Sincerely,

Jaimie E.
Care Consultant
Alzheimer’s Association

This message has been edited. Last edited by: Online Community Administrators,

Well, last night I went in to see my Dad. He was out of control. He told me to get out. So, when I tried to leave, he stood by the door so he could see the code to get out. I turned and walked to the back to use that door, not know he followed me. He got out and insisted that I take him home or he said he would hit me. He had his fists clenched. He has never hit me in my 53 years. The nurse told me to leave so when I went to my car, he tried to run after me and he fell. He kept screaming for me to take him home. It was heart wrenching. They finally got him in the facility after I left. At this point, the dr. is going to try some new meds. I guess I shouldn't go in to see him for a while?? I hate to leave him without anyone other than the staff. What should I do?

Dear Lovemypapa,

I am very sorry that you had to experience such a heart wrenching situation last night. Your father seems to be in a very challenging phase, that hopefully with some time and the right techniques you can get through soon.

With new medication you father’s mood and behaviors may change. But often times there may be underlying causes for certain behaviors. There is possibility that certain feelings are activated when he sees you because you are a symbol of his old home. If you do not feel comfortable seeing your father for a period of time it is important that you do not feel guilty. You witnessed your father do something that he had never done before the disease and that can be a very emotionally draining and difficult experience.

One option you could consider, before visiting your Dad again, is to first speak with the staff that interacts with your Dad on a regular basis. You may want to ask them about his behavior throughout the day to find out if this behavior is only present when you or other family is around, or if perhaps he repeatedly acts in an agitated or aggressive manner. Before returning for another visit first try to find out how your Dad’s behavior is when you are not around.

If you do plan to visit you may want to keep the visits short and perhaps during one of his regular activities like mealtime. Some caregivers find a good time to visit their loved one is right before mealtime. This way when you leave, they are occupied with an enjoyable activity. If he gets agitated when you say you have to leave, try to not tell him you are leaving. Instead, you can tell him you will be “over there for a while,” and then leave without his knowledge. Also the facility’s social worker may be a useful resource to help you come up with other ways to make visiting him more manageable.

When caregivers experience a situation similar to yours, which leaves them feeling overwhelmed, they often look for alternative ways to give support to their loved one. If phone conversations are pleasant for your father, one suggestion some caregivers use is to call their loved one on the phone regularly. Calling your Dad may serve as a way to let him know you still care and are concerned about his well-being, as well as a means to monitor his condition, especially if he will be on new medication. A phone call may also help to relieve some of the normal guilt you may feel if you are not able to visit him.

There are a lot of things to keep in mind, but what is most important is that you and your Dad are comfortable. That may mean you should not visit for a little while, but continue to work behind the scenes with the staff and doctors to help monitor and perhaps improve his behavior.

I hope you are able to make a decision that you are satisfied with, and if you have any other concerns or questions please feel free to call our 24 helpline at 800.272.3900 and speak directly with a care consultant.

Best Regards,

Jaimie E.
Alzheimer’s Association
Care Consultant

I am so sorry, I hope medication helps.

I am so sorry but understand completely. My family had to place our dad in an lock down AL situation and though it was not an entire fib I told dad that the doctor needed him to stay at the facility. That seemed to calm him to some degree. Meds can sometimes be tweeked to address behavorial problems. The facility that dad has been at is great about finding the balace-calming him without outright sedation. Good luck and please remember that we will come out on the other side--a little battered but hopefully stronger.

Well, I tried to see Dad last night and the staff asked me not to. He was threatening them and offering people money to take him out. I decided to wait 2 days and try again. He only has so many days left on this earth and I hate not being able to see him. Every time I go in, he's standing at the front door waiting to get out. I asked the nurse to meet me and go in with me on Sat. just in case. I'm trying to understand why something this devastating can happen to a kind, gentle man.