Mom's Excellent Adventure

It was a long day today. I got out early and bought Mom's new bed for the ALF room. After that I came home and removed her current mattress and box spring from the frame. The bed has been too high for her and she can't touch the ground with her feet. Removing the frame has made a difference. The care manager from the home health agency stopped by around noon so that we could brainstorm ways to care for Mom in the next week. After that she and the caregiver helped me get Mom into her wheelchair and eventually into the car. That took almost 40 minutes. At the doctor's, it was decided to take Mom off of one of her blood pressure meds. She received a B12 shot too. The doctor scheduled a CT scan to check to make sure that she doesn't have NPH. Then, she took a ride home in a van with a lift ramp. She did pretty well, with a few protests. She was restless last night so neither of us got very much sleep. I hope she sleeps tonight.

The Best Care that Money Can Buy

Today I was thinking about just how much work is involved in caring for a person with dementia and I wondered about people who were caring for loved ones on a limited budget. Like, what if I couldn't afford to put Mom in an assisted living facility, could I deal with the idea of putting her in a nursing home? I don't think I could, not at this point. But what about those families who have no choice because of financial constraints? They are burned out from caregiving. How much help is there really out there for lower income families or even middle class families? Not much in my eyes. Most of us are overwhelmed just by trying to navigate 'the system'. Throw in the financial burden and well, you can see why the stress level is so high. So I thought about what care is like in other countries. And I started to do some research just to find out what is available. I found this article which explains that dementia care in Europe isn't much better than it is here. But there are other ways to support the main caregiver too. For example, families can help. Unfortunately the burden of care is usually placed on one primary caregiver, usually a daughter, son or spouse. If members of a family cannot provide physical support there is always emotional or financial support which can be provided. If you're wealthy, then you can provide the best care that money can buy. But doesn't every dementia sufferer deserve that, not just the ones who can afford it? Long term care insurance can help fill the gap, but it can be expensive. So how do burned out caregivers handle it? How have you handled it if you are a caregiver?

Life is like an Amusement Park Ride

Mom's mood has been like being on a roller coaster. Up and down, happy, teary. Agitated, calm. She keeps asking when she can go home. I try to distract her with a hand massage or a game and that seems to work for a while. Television programs will agitate her. Today she was watching "Little House on the Prairie". It was an action-packed episode about a runaway train. Mom was agitated and upset so I changed the channel to a comedy and she calmed down. But I'm not sure how to answer the "I want to go home" statements. It must be frustrating to be told that you are already home so I just try to make her feel safe and comfortable instead. There should be a college course on caring for the person with dementia.

I'm also worried because I was never able to obtain a follow-up specimen to make sure that her UTI is gone. I feel like such a poor caregiver because I don't want to upset her so I choose the path of least resistance.

Reinforcements

I've had to call in reinforcements to help me toilet Mom. Thank God for Elizabeth. She is an angel.

I have been worrying about Mom's adjustment to the ALF. I'm afraid she is going to 'flunk out' and have to come home or that she is going to hate it there and be angry and mad at me. If I can survive the next 2 weeks and continue to pray for Mom's adjustment to the ALF it will be a miracle. Please God let this adjustment go relatively well. I know she will receive better care there. If she will accept it. Outside of toileting, she is wonderful and tells all her caregivers that she loves them. Especially after the turmoil in the bath.

It's so hard to hear her say that she wants to die. I love her so much that this just rips my heart to pieces. But I don't like seeing her losing her dignity like this.

Barack Obama Accepts Democratic Nomination

Historic Moments in US Politics

Here in Minneapolis/St. Paul we are gearing up for the Republican National Convention. Next week, I fear, is going to be a commuting nightmare for me. You see I work in St. Paul, on the state capitol complex. We will have an armed state trooper at the door into our facility for the 4 days of the convention. Parking is going to be difficult. I'm worried about whether I will be able to make it home to Mom on time.

Yesterday's surprise announcement of Sarah Palin as McCain's running mate was a shocker. I do not feel that this woman is qualified to run the country if McCain wins the election and something were to happen to him in office. If this is an attempt to attract disgruntled Hillary supporters then they've blown it. My sister and I both feel insulted by this choice. I'm sure this woman is quite capable however she has absolutely NO experience in either the domestic or international arena. Sure it garnered excitement as the first woman on a Republican ticket but that's it. On the other hand, as a Hillary supporter I was inspired by Obama's acceptance speech at the DNC in Denver. It's really time for someone with his values to take command of this country. And he's right, we as citizens should not rely entirely on government; we need to help each other by volunteering and becoming involved in our communities. I'm confident that Senator Obama can help steer my country back onto the right track. I'm always proud to be an American, but I am especially proud at this time in our history.

This morning I am deeply disturbed after reading an article in the paper about nursing home aides who abused residents with dementia. I am so angry about this that I can't get it out of my head. The most upsetting part? They did this to 'make their job more fun'. I could spit I'm so angry. I think that not only should these individuals be prosecuted, but they should also have to register as sex offenders for the rest of their lives. These individuals were teenage girls. If any of them should ever cross my path I don't know how I could contain my rage and not beat the shit out of them! And there we have it, the stigma that people with dementia are not human. But they are. And they are someone's wife, husband, mother, father or grandparent. They are loved by someone who remembers them as a vital member of a family. I keep looking at my mom and wanting to cry thinking that someone could do this to her. I would fight them to the death if they did.

Counting down the days reluctantly

Today I purchased the paint for Mom's room and dropped it off at the ALF. I shopped at Penneys and bought a blanket, mattress pads, sheets and a comforter. It seems so weird not to include Mom in this. But she would freak.

This morning I had trouble getting Mom out of bed. She ended up slipping and I had to call the neighbor to help get her into her wheelchair. Then she had a manicure and a haircut today. I used a new service that comes to the home. Mom seemed really upset throughout the whole process but when it was done she was smiling and happy with her new haircut and nail polish.

Sundowning is the Pits!

Mom's sundowning has gotten worse with the shorter hours of daylight. Last night in bed she was sleeping fitfully. Olivia laid down next to her and Mom starting flailing her arms and hit Olivia several times resulting in Olivia giving Mom a nip. I think this has happened before because Mom has teeth marks on her arm that I have been monitoring. Mom denies that Olivia had anything to do with them. They are nicely healed now. Except Mom keeps picking off the scabs even though I have them covered with Band-Aids.

Today was mostly an overcast day. LaShay is back as Mom's afternoon caregiver and it went very well. In the past Mom has gotten extremely upset when LaShay showed up. Today when LaShay left Mom told her she loved her.

We are going to paint Mom's room a soothing shade of pale blue-green called 'Watery'. It's nearly the same color as the one we used in her bedroom here at home. We are trying to keep things as familiar as possible for Mom's transition to her new home.

Yesterday I spoke to the Geriatric Care Manager and she helped me feel a little more at ease with this decision. I know we can never be completely at peace with this though. I feel like this person is going to be a huge asset for us. She said that she has a client at Summit Place and we could not ask for a better place for Mom. She knows many of the staff there and she said they are wonderful.

Someone at work recently told me they are a Christian. In my opinion, a Christian doesn't have to say a word about being a Christian; they say it through their actions, and through how they treat others. There is a verse in the Bible, something along the lines of God saying that when you mistreat the weakest of his children you are also mistreating Him. This person who professes to be a Christian treats the weakest of God's children with no compassion or empathy. And that is all I'm going to say about that. We all have struggles and crosses to bear in our lives. It is important that we all remember that when we interact with each other. Do unto others as you would have them do unto you.

Mom had a good day today according to her caregivers. She is in a great mood and has been coloring since I got home. I started crying today thinking about Mom moving to the ALF. I worry about her being happy and adjusting to her new surroundings. I worry about the day when we will take her to that ALF and drop her off there. She is going to feel abandoned. It rips my heart out to think that she has to go through this. I've been praying for an easy transition for all of us. I wish someone was available to coach us through this. But it's not like we are the first family to go through this. Others have paved the way before us. I hope that I can build from that strength.

What to Do?

How do we surreptitiously pack up and move Mom's stuff without her getting suspicious? That is the latest thing that we are wrestling with. If anyone has any suggestions please let me know.

Mom had a rough night last night. She wanted to go to bed at 8:00 PM but then she was up at 10:30 PM and later at midnight, 1:00 and 3:00. She was up at 5:00 again. I don't know if she was dreaming or what but she was crying out throughout the night. I asked her if she was in pain or if she hurt anywhere and she would say no. I'm not sure what was going on, most likely something related to the ALZ.

We are using the wheelchair to get her around. This is especially hard when she needs to use the bathroom. She seems to have forgotten how to get up. It can take several minutes to gently persuade her to stand up. I also think she is afraid of falling. It's sort of like a kid who has hurt himself; rather then acting upset the parent brushes it off and then the kid doesn't cry. Unfortunately I tend to get panicky and freaked when Mom falls and she has chosen to remember this. This is my theory anyway.