Coming Home
Oct 18 2012 in Caring for Parents, Linda's Blog by Linda
We brought Mother home the end of February 2012. At the nursing home, she would get very anxious and upset and confused at night. We figured she had Sundowners. She would call us or have someone else call us for her and want us to come get her and take her home. She didn’t live there. She didn’t have a room there, etc etc. So, we wondered, when we took her home, how this would manifest as she would be home.
Once home, she would get anxious and worry and ask if she should go back to the nursing home. Maybe she came home too soon and on and on it would go. Along with the anxiety, with dementia, you can get a lot of anger and we sure got that. She is mad at everyone. She hates being the way she is and is aware enough to realize she can’t think right anymore. She will say she hates God and will yell at Him. Lots of yelling and beating things, throwing things, swearing. She will often yell at me to shut up go away and leave her alone. She yells at the dog and throws things at her, tries to kick her, yells at my dad a lot. When he’s home he’s the scum of the earth and when he’s gone, it’s where is he? Call him.
This doesn’t go on constantly but often and almost every night to some degree. She got physical and occupational therapy through home health and it was helpful. Physically, she did much better than anyone expected. She was able to walk and do a lot for herself. She had trouble with pulling her pants up and things that required use of the left arm. Helping her physically wasn’t a big deal.
The thing that really bothered me and was hard for me was the yelling and the telling me to go away and personal attacks. Also, the constant, I want to die. Pray that I will die. I don’t want to live like this. I’m going to go up in the woods and get lost and on and on and on.
It was very mentally draining. It got to the point that she was pinching me and hitting me. We did ask the doctor for something and he gave her Prozac. It seemed like, after a while, she was actually getting worse, she he changed her meds to Lorazapam but that didn’t seem to help much either.
She has had a few falls due to either being ornery and going outside without waiting for me to help her or the left side neglect. She hurt her tailbone one time when she fell, her ribs another time and her shoulder a couple of times. There were a couple of times she would get into a narrow space and fall while turning around. She would step on her left food because of the neglect and fall.
Because of my mom’s health, it was decided that the only way to keep any assets for my parents and the only way for him to pass anything on was to put an addition onto our house so that I could help him with her care. They were going to move nearby anyway but after the strokes we decided it would be best for them to be on the same property. So they had to sell their house that they loved, and move to a state they didn’t want to move to. They were going from the mild climate in Tennessee to the cold of Wisconsin and they both hate cold.
The packing would often set off rages that would last for hours. We had come back home in July (to Wisconsin) for about a month when they started construction on my house. My dad had gotten a loan against his house to start the construction. Since we were going north, there was a push to get started because it had to be done before winter and we needed to move before the snow flew.
The day after we got back to Tennessee, she had a TIA which took out her speech and more of her left side. She had just been signed off of all therapy and now needed to start them all up again. This time she also got speech therapy. She would choke on thin liquids so had to put her head down in order to swallow any drinks. I also had to watch what I made her for meals. She would have trouble with bread so I would toast one piece of bread for a sandwich and put tuna salad or ham salad on it and then cut it up into bite sized pieces. She ate it with a fork and that worked pretty well. She was taking fiber in her tea before the TIA and wasn’t able to do that after so I put it in her yogurt and that seems to work well.
There is so much to do to get ready to move. As soon as we got back, which was the beginning of August, I told my dad we needed to start packing. He kept putting it off and putting it off. I think he put it off because it would make it more real once he started packing and he didn’t want to leave. We didn’t start packing until the beginning of September and we had to be out by the end of September. The house had sold for a lot less than he was asking but it sold just a few months after being listed.
Packing was hard. Mother would get mad and leave and go outside. It is amazing how fast she can move when she is mad. Then I have to drop what I’m doing, put my shoes on and run after her. I can’t get her to come back in so I have to stand there and watch her do whatever it is she wants to do, sweep the patio, yell at my dad or whatever.
Sometimes she would go sit in the car. I figured, well, that’s okay. I’ll go back in and pack. Then I’d have to stop again and make sure she made it up the stairs okay. She would try to help and put things in boxes or take things out of boxes and unpack. It was a real challenge to pack and we had a time limit and they had a lot of stuff to pack.
My dad couldn’t help pack inside because they had as much or more stuff outside to pack between the garage, the utility building and the lawnmower building. They were both very much outside people and my mom used to love plants so they had LOTS of plants and gardening/yard stuff. So I had to pack the inside while he worked on the outside. Some of the inside stuff was stuff he had to go through so then I’d have to wait til he came in so I could ask him about it.
What I needed was a mom sitter.

Denise said on October 18, 2012
You write such a compelling story, Linda. I feel I’m right there with you.
You have such a way about you in how you manage all that happens. You seem to face all with a calmness that’s quite admirable. What’s been the toughest situation for you so far?
Moving is never easy–I can’t imagine how much energy this move required of you. Are you all settled in Wisconsin now?
Linda said on October 21, 2012
Thanks, Denise. I think the hardest thing to deal with is the anger and swearing. I’ve been thinking about that question for a while. My mom is gone, eaten up by dementia and someone else is living in her body. The strokes have exacerbated the dementia a lot. I think, the biggest challenge for me, has been trying to love this new person that lives in my mom’s body. I still see glimpses of her now and then but, for the most part, she is gone. Yesterday there was a lot of yelling and screaming, beating things on the counter and table, taking all the garbage out of the garbage and putting it on the floor, then putting EVERYTHING in the garbage, throwing things on the floor and yelling at me to clean it up. Why? Because I had washed her hair. She thought I had colored it and done it wrong because it does need to be colored. We haven’t found her hair color yet. Boy, was I sorry I washed her hair!!! We did just get her meds changed but it can take a little time to take effect and we may have to play with the dosing a bit.
We are home. My home. They are getting settled but it will take a while. There are still a LOT of boxes in the garage. The best thing about being here, is that they have their OWN SPACE!!!!!!!! That helps tremendously. I am here 24/7 but not right with her 24/7. She spends most of her time on her side and I help when needed and check in on her now and then. That is a HUGE help to my sanity.
Trish said on October 21, 2012
Linda, It’s difficult enough to manage physical, speech and occupational therapy appointments, doctor’s appointments and day to day care but then to add in a move to another state! Holy cow, you’ve had a busy summer. I understand about the frustration with the medications too. Once you get settled back home and have her set up with a new doctor, don’t be afraid to consider a different medication. Sometimes it takes a few tries to find the one that works best. Let us know how the move went and how you’re doing. Take care!
Linda said on October 21, 2012
Yes, Trish, it has indeed been a busy summer. We made it home in one piece. I plan to post soon to kind of catch up to now. We did get a med change so we’ll see. Yesterday did not go well but she had only been on it for a day or 2. Yes, it can take a while to find the right drug and the right dosage.
Meryl said on October 21, 2012
Linda, you definitely have a lot on your plate! Hope everything goes well with your move and things settle down for you soon!
Linda said on October 21, 2012
Thanks Meryl.
ejourneys said on October 21, 2012
Linda, you’ve been doing the Labors of Hercules — but even Hercules only had to do them one at a time!
To have the emotional drain on top of the physical, plus doctor and medication issues, plus packing and moving — I hope you were able to get a mom sitter for at least some of all that. Bless you for persevering in the face of chaos and exhaustion. I hope all the dust starts to settle soon.
Linda said on October 21, 2012
Thanks, Ejourneys. I think it is beginning to settle.
Bette said on October 25, 2012
Hi Linda,
The changes in someone, when their outside seems the same, can be so difficult to accept, manage and provide nurturing care for. Initially, as I began to see the changes of dementia in my mother, I would think of it as a bad moment, or day – sometimes it was, but as it progressed it was truly helpful to remember that there was a disease orchestrating these changes. You are so wise to know that and remember that’s what is happening. I’m so sorry.
I’m glad your parents have their own space. So helpful for everyone. They’re sooo fortunate to have that space near you!
Thinking of you and understanding the shakiness that comes when the behavior requires physical and emotional challenges as well.