It is 5:30 p.m., you just got off work and rushed to the assisted living where your mom is to visit. On your way you are talking to your kids on the phone, trying to make sure they are situated and where they need to be until you get home. You get there and she is in the same stained clothes as yesterday, she has a soaking wet depends on and her hair is not combed. Just what you were looking to deal with when you get there after a long day at work. Can you ever just go and visit without having to deal with a problem?
Or…it is 11:30 a.m. and you arrive at the nursing home where your husband is after getting up at 8:00 a.m., eating breakfast, taking your pills, getting dressed for the day, the therapy company came and went for you and you are rushing to get to him before lunch arrives so you can help. When you get there he is in his room, in his pajamas, you can tell his face was not washed and his teeth definitely were not brushed. Just what you were hoping to see, right? If that was not bad enough, he is talking out of his head about nothing that makes sense. He is rambling on and on about this car that he rebuilt about 35 years ago and that is not really what you were planning on talking about when you got there.
Or…it is 7:00 p.m., you worked all day, went home and took care of things there, got dinner for you and the kids and now you are stopping at mom and dad’s house to check in. Dad thinks he has everything under control but in the meantime mom had not eaten any dinner yet, she is in front of the television and has not really done anything all day. She has to go to the bathroom and dad thinks she is fine to get up and go on her own but she is not, so the chair she is sitting in is soaked. Now, you have to get her to the bathroom, clean up the chair and get them some dinner. This will be just the visit you were looking for, right?
Do any of these scenario’s sound familiar? Unfortunately, they do to a lot of people. The good news is, you are not alone. Visiting your loved one can be hard, for different reasons. However, it can also be a lot better. Although the outcome will not change, the course of this nasty disease can be a lot better if we steer a different way and that is what I want to talk about for a minute.
So in the first scenario, at the assisted living, here is what really happened with your mom. Her favorite aid, Mandy, was working today so helping her get dressed and cleaned up was no problem at all. Mandy was actually very proud because she got her a shower with no issue at all this morning (which does not always happen) and picked out a very pretty blue outfit to dress your mom in today, which she happily put on. There was a group coming in to do a sing-along that your mom had been excited about and waiting on and she wanted her to be all ready for it. So after lunch the group came and your mom sang her heart out, she had a great afternoon. She was so tired out from all the singing she laid down to take a nap afterwards. When she woke up her hair was a little messy because she had been laying on it. She was also a little confused and thought it was morning so she had changed and she put her very favorite outfit on, except she took it out of the dirty clothes from yesterday. When the afternoon aid, Linda, came in her room to check on her and saw she had her dirty clothes on, she tried to help her change but she got upset because she had just changed herself back into this, her favorite outfit. Then, because she was upset, she did not want her to fix her hair. She did however let Linda change her depends and help her in the bathroom but because she had some extra punch at the sing-along, she just had an accident before you arrived which is why she was soaked.
In the second scenario, your husband was having a rough morning. He woke up confused, wanting his mom (who has been dead for quite some time) and just was not ready to get dressed yet. The nurse, Jeannie, had spent a better part of the morning with him so that he would change his focus from his mom to something else that would make him happier and not upset. She was in his room playing his favorite music and they were talking about the cars he used to fix. Her plan was to get him in a better place and then get him dressed before lunch when he was feeling a little better. There was an emergency a few rooms down and she walked out to take care of her other resident right before you walked in so he didn’t get dressed yet.
Finally, in the last scenario at your parents’ house, this actually is exactly the case. Your dad is not completely healthy but he is slightly in denial and thinks he is. He has always been in charge of the family so no one wants to tell him that he cannot take care of them anymore. Your mom has dementia and is much worse than your dad is willing to admit at this time. It is a delicate, difficult situation and help is needed.
As you can see, situations can be much different than we realize. Perception is everything.
In the first situation with your mom at the assisted living, she actually had a great day! This should make us happy. Sure, she had clothes on from yesterday that were stained but in her mind she got herself changed to be ready for the day. She was probably proud of herself. It may be upsetting to her when the aid is trying to change her and then you get upset when you get there because in her mind all she knows is that she already changed. In the grand scheme of things, is anyone getting hurt by her dirty clothes? Is it causing harm to anyone? Again, she had a great day! Her soaking wet depends is also a result of her day. It is a positive thing that she was drinking and got extra fluids for the day. Her messy hair is also a result of her fun day, she was so tired out from the sing-along that she needed a nap and got messy hair.
Next, your husband at the nursing home. If we can understand that every day is not the same and we do not always have good days, it will help us. It should be comforting that the nurse was taking her time and trying to calm him and make him happy before forcing him to get dressed when that is not what he wanted to do. He has dementia, he does not have a schedule and does not realize he should get dressed first thing in the morning. Has anyone ever gotten hurt from not being dressed by 11:30 a.m.? Is it causing harm to him or anyone else? It may not be what we want to see but the focus should be on him and how he is, not what we want. It is normal for us to want to see “normal” things happening and on schedule like they should be. But that’s not always the case, sometimes our loved ones living with dementia have other plans.
Last, the situation at your parents’ house. Again, this is difficult. You are perceiving it as a bad, unsafe situation where your parents need help. Your dad is perceiving it as him taking care of your mom. It is delicate and needs to be handled with care.
When it is time for your loved one to move from home because they need more help, whether it is to an assisted living or nursing home, you should look around and choose a place that best fits you and your family. You should always be an advocate for your loved one and ask questions and talk to the staff. However, try not to automatically assume they are doing something wrong or not taking care of your loved one. Trust them unless you have reason not to, be partners in your loved ones care. If you go in to visit, like in the first two scenario’s and things do not seem like they should be, do not automatically get mad and blame the staff or think they are being lazy or not doing their job. Understand that a lot of different things could have happened and the way we are perceiving things is not always necessarily how they are. Remember the scenarios’ I gave. Ask questions and try to gather information instead of getting mad, blaming, and letting it ruin your visit and your time with your loved one. Remember, nothing is going to be perfect or ‘as it should be’, things are different now. Don’t let the small things dictate the way you spend time with your loved one.
Tips to Improve Visits With Your Loved Ones Living With Dementia
Accept them unconditionally as they are
Be in their world, wherever they are. Even if you don’t understand it, just go with it
Agree, don’t try to correct them
Realize that not everything will be perfect or as it should be. Unless something is causing harm to your loved one, maybe it’s not as big of a deal as it seems in the moment, it’s just different and that’s ok
Realize they can no longer reason, they don’t have the ability
- If they are in an assisted living or nursing home, ask how your loved ones day went before just assuming you know what went on by only what you see
- Remember, perception is everything