A little frustrating

Hello again

As with anyone with Dementia, they go through different stages on a daily basis' Sundowner is one of them. Their personality changes, they become a little bit more difficult to deal with. So it is with my mother. Mary. Some days, at night, she is fine. And other days, when she is a little bit tired, mom is more difficult to deal with. She is stiffens up when trying to change her, it is harder to feed her.

Tonight was a perfect example of sundowner. I was trying to feed mom. She would only open her mouth  a little bit and I try to put the food in, then she would close her mouth before I even finished giving her some food. Thus the food would go all over the place. Even giving her something to drink was difficult tonight. When trying her mom would only open her mouth a little bit, the drinks would run down her chin. And she would put her head as far back as she could. This only causes her to choke. And then she coughs.

Even if I give her something to drink, slowly, mom would still do the same thing. And being this way, she just would chew and chew her food, put it to the one side of her mouth. And wanting more. Of course I am wise to this and would have to say to her, repeatedly, You have to finish chewing and swallowing first before I give you something else. I have to keep asking her to swallow her food. When mom is tired or experiencing sundowner symptoms, she will just chew and chew a mouthful for a long time. Even though the food is soft and doesn't require mom to chew in excess. She still does.

It is not mom's fault. This is just part of the disease. It is frustrating at times. Especially when I am trying to get dinner done and onto dessert, so we can get changed and spend time just sitting and talking.

I only have so much time to spend with her. As we all know, I have to leave at a certain time to get back before it is to late. And I truly do want to spend as much time with mom as possible.

Another thing with this, is that I get frustrated and on top of mom chewing in excess, she just wants to hold my hand,. Even though I am trying to do something that requires the use of both of my hands. Or I am trying to get things tidied up. And when I am frustrated like this, the last thing I want to do is hold someone's hand.

I have mentioned in the past, even at the best of times, I don't like to be touched. And I try and put this anxiety aside when I am with mom. I will hold her hand and just deal with my own stuff. It is not mom's fault I don't like to be touched. It is my own problem. And tonight I noticed I just hand to let go and sit back, and not hold her hand for a minute.

Most would say  it is not a big deal that I have to do this. But it is for me. I feel guilty for not holding her hand. Mary is alone with no one to speak with during the day. GOD knows if one of the staff would take the time and sit down with her and just talk to her. Knowing Mary isn't going to say anything back. Verbally. Mom speaks volumes without saying a word.

Now when I am feeling anxiety as I did this evening, I am not able to catch all that mom is saying. It is a shame that this happens. I feel guilty about this as well. I just want to be there for mom.

And when mom is like this it takes a long time to get dinner done, thus taking away the time I like to have with her, after the spa treatment is done and I just hold her hand, speak with her, sing to her, before I have to leave. By the time it is all done, I have to pack up  and go.

As it was this evening.

It is just part of her disease. I deal with it, but sometimes, when I am late getting there. I want to just get dinner over with so I can spend some quality time with her.

It is hard sometimes and very emotional. As it was this evening. I left and had to sit for a bit. I was emotional and needed a good cry.

I have not told mom about my disease and that is the way it is going to stay. I just hope it does not interfere with taking care of her. It is the beginning and might not have any major impact on my life for many years. Let us hope it is that way.

I just want to take care of my mother and do the best job I can. Yet with this news, comes more depression over not  being able to afford a place in White Rock or being able to get the help I need.

We all need help. That is the way it works. I am no exception. And it is very stressful not getting any help, at all, form anyone or any organization.

So I will continue to do all I can for my mother. With all of my heart and soul. Without anyone's help. So be it.

GOD bless and good night

Kristopher Schmuland