Advice Needed

[SharonS]

Hello everyone. I have read this board many times and have seem some great advice, as well as support given out. My Mom is going to be 76 this May. Three years ago she suffered a stroke, which she recovered from with minimal residual problems. Two years ago she was bleeding internally and almost died. While trying to stop the bleeding, they punctured her bowel while doing a colonoscopy. She spent 9 weeks in the hospital. She has been at home ever since. They said she had multi infarct dementia. Up until recently, most people wouldn't even know it.

Anyway, WDW has always been my favorite place in the whole world. My Mom took me there for the first time in 1973 when I was 12. Her and I have gone ever since.

After all of these problems, we have still continued to go to WDW. Last May we went and stayed at AKL. My Mom really loved the place and actually wanted to go back. Since then we have gone in August, October, November, and have trips planned for March and May.

When we go, we always get a wheelchair (manual), as my Mom has very limited ability to walk. I know that I will be glad that we did the trips, but they are very rough on me. When we get there, she usually decides that she doesn't want to go to the parks. I don't feel comfortable leaving her alone at the resort. If we go to one of the parks, everything that I ask if she would like to do, she says no. If I can convince her to go to the shows, etc., she usually enjoys them. I have also tried asking what she would like to do, and she usually says 'nothing'. I have then said, well then we are doing 'this'. Sometimes, if she is tired, she can be very irrational, and get angry and start yelling at me. I try to let most of it go, but it really is embarassing. While there, she has gotten mad and told me that she hates me and that I don't do anything for her. While I know that it is the dementia causing this, it is still very hard to hear. It is only my Mom and I...we don't have any other family. Most trips, I end up crying 3/4 of the time.

Normally, when I go to WDW, I am a commando style person. Since my Mom's illness, I have been going, but really giving up everything I enjoy. I like Splash, Big Thunder, Space Mtn, etc. Most trips, I am lucky if I even get to go on these, since I don't like to leave her waiting all the time. Last time, I wanted to see the Lion King Show in MK, but she didn't want to go. She tells me that she doesn't like rides, and insists that these are rides, even though she doesn't have to move out of the wheelchair.

These trips are really important to me. I have basically given up the rest of my life to take care of my Mom. I really don't do anything else anymore, or go out with friends much. I can't give up the 1 thing I really love. In addition, she really wants to go, but just likes to be at the hotel. She has become friends with the GM there, and that is very important to her. Does anyone have any advice on how I can do some of the things that I enjoy? It is really frustrating to be in WDW and unable to go on anything. Many times I can't even use fastpasses, because we can't get to the parks early anymore. By the time we get there, the fastpasses are for a time later in the day, and we never get to stay at the park very long.

Sorry this is so long, but I am about at my wits ends. Our March trip is actually for my birthday, and I really want to have a good time. The last 3 years, there has been some health crisis with my Mom, so I really haven't had a birthday. I asked her about doing the 'Wild by Design' tour at AK, but she is saying she doesn't know if she can handle it. She says she can't stand the bouncing in the wheelchair. BTW, her shoulder is permanently dislocated (she doesn't really have any pain with it though). When I mentioned going to MK on my birthday, she has started to give me a problem and said that she couldn't do anything there and that I she didn't want to get hurt.

I know that many of you are dealing with difficult situations. After reading some of your stories, my Mom's behavior often mirrors that described by some of you with autistic children.

Thanks for any advice you can offer. I know that many of you will understand my frustration. Many of my friends just don't understand. They think because my Mom is at home, everything is fine. They don't realize all of the problems there are and that I am struggling to keep her at home.

Sharon

 

[teri]

{{{{{hugs}}}}}} Bless your heart.

I have done the 'cranky demented parent' thing on Disney vacations, and I admire your ability to persevere. Once was all I could handle... but then my parents were not big Disney fans to begin with. I have 2 suggestions that might make your trips much easier.

First, maybe you should hook up with other people who are going at the same time, and go as a group. You might get some relief - there are often folks at WDW DIS meets, for example, who sit out the rides, and they could wait with your mom. At the very least, you would get some understanding and support. It might give your mom a distraction, too.

Another idea is to use Fairy Godmothers - they will sit with adults who need supervision. Their number is (407) 969-9847 and toll free 877-611-4314, and they are very good.

 

[SharonS]

Thanks Teri. I didn't know about Fairy Godmothers!

I'm not sure if it is perserverence or selfishness sometimes! Our trip last may was really bad. However, I couldn't have my last memory of a trip to WDW with my Mom be so horrible. I have learned to accept that there will be good and bad moments on every trip. The hardest part is when she becomes irrational and nothing you can say or do gets through.

Last trip, I wanted to go in Tough to Be a Bug. She didn't want to go, so I asked a CM where I could leave her near the end of the ride. The person was great and took the wheelchair and said they would keep her up near them. When I got out of the show, my Mom was really mad. She said she didn't need anyone to babysit. She then didn't want to do anything, but I wanted to see the parade, so I just told her to close her eyes and go to sleep if she didn't want to watch. While walking to the parade, she put the brakes on the wheelchair twice and said she wasn't going with me. I just kept my mouth shut and removed the brake and kept going. When we got to our spot, she didn't want any part of being anywhere near me. She decided she was going to the other side of the street, and tried to wheel herself. She almost ran into someone, then I went and got her.

I know that we could just stay home, but I just don't think I can give up everything in my life. I have always enjoyed travelling. Many times I have gone myself. I love Disney....even bought into the Vacation Club. Unfortunately, with the situation, I am losing my desire and interest.

Thanks for listening....sometimes it helps, just to get it out.

Sharon

 

[SueM in MN]

I'm glad you came here. I can empathize with the problems with getting fastpasses. By the time we get to the parks, some of the rides have given out all their fastpasses for the day. Other rides have return times of 8pm, when we aren't even sure we'll be in the park until 3pm.

I think teri's ideas are really good, especially the "trying to link up with other people". It might not seem like "babysitting" to your mom, if it's just another person from a group you've been with all day.

I have worked with people with dementia and your comments about sounding a little like autistic behavior are right on. People with dementia are sort of like 3 year olds; not in intelligence, but in the way they view the world. They have lost some of their ability to look at things from other people's point of view. The current popular saying "It's all about me" fits their idea. If they don't want to do something, you are not going to make them do it. Just like a 3 year old sometimes will dig in and refuse to do something or wants to leave when he's ready, reagardless of anyone else. They also tend to be fearful of new experiences and might cover it up by refusing to do it. Another thing that is missing is the tiny voice in the back of your head that says "It is not a good idea to do (or say) this", so what pops into their head often comes out of their mouth without anything filtering it.

It sounds like you could also use some support at home. There are Alzheimer's support groups in many communities. Althought she doesn't have that diagnosis, the behaviors and stresses on the family are the same. I didn't see where you live, but if you call your local Public Health Department (it might be a county Health Department), hopefully someone can help point you towards some resources. Also try your local United Way. They usually have a help/referral line (often called FIRST CALL FOR HELP). In addition to support groups, respite care is often available. Sometimes it's a volunteer visitor to come in and be a friend (more than a babysitter) for a few hours so you can go out and do something without worrying. Getting a little more support in your life at home might make the trips to WDW go more smoothly.

 

[teri]

Actually, I have even another idea.... take a respite break, yourself. If you don't want to go solo, hook up with friends, or go to a DIS meet. We had a wonderful ladies trip last year, and lots of people went 'solo' to DIS Con. My husband is behind me on this - he can see that I need a break sometimes. Find someone to "come for a visit" while you are away.

{{{{{hugs}}}}}

 

[SharonS]

Actually, you don't know how bad I would like to go solo!!!! I would just love to run around and not be obligated to please anyone! My cousin and I were supposed to go last October. Right before we were to go, she left her husband. Then, we were still going to go, even after Sept 11, but they issued the first of those heightened warnings. I couldn't take the chance of getting on a plane and having something happen to me. I knew that my Mom couldn't make it on her own. So, my cousin and I didn't go, but my Mom and I drove down!!!

My cousin was going to come with us in May, but then my Mom wanted to stay at AKL. I was going to pay for the hotel (DVC) originally, but I can't pay cash for someone else. In addition, I just hate to subject someone else to the possible problems and having a bad time.

I guess I am just overwhelmed. I haven't really looked into any type of help. With working and all, there just doesn't seem to be enough time to do it. I would just love for someone to stay with Mom and let me go for a few days. Sue, your ideas are great. I just haven't really looked into anything yet. I think I am going to have to, because I am really reaching the end of my patience. I think I am getting depressed because it doesn't seem like I have anything to look forward to anymore.

 

[SueM in MN]

I was a Public Health Nurse for 12 years, so I recieved intake phone calls from people with stories like yours a lot.
Sometimes, just talking to someone who knows what it's like to live in in your world, helps a lot.
Sometimes, it helps to know about the services that are availble, even if you don't them. We have never used respite services for our DD, who has multiple disabilities. Just knowing that it's available if we do need it is comforting. I know of other people who do use respite services and wouldn't be able to manage without it.

Good luck and lots of Pixie dust to you.

 

[SharonS]

Well, we have returned from our trip. It was good and bad. My Mom was pretty bad this time. In 6 days, we only got in 7 rides/attractions...that includes shows. When we got to the parks, she would just be miserable. The dementia was much worse than when home. I think it was a combination of being away from home plus being tired. When she got in these moods, I was called some pretty terrible names. I tried to ignore it, and just tell her she would have to be patient, but it didn't work. When we were at the hotel, where she wanted to be, she was pretty good. Part of me doesn't want to take her, but deep down, I know she is enjoying herself. When she talks about the trip, she smiles and says she had a good time. So, I guess I just have to develop a tougher skin and continue to go.

This trip was for my birthday. The cast members at AKL made it a truly memorable birthday for me. This was our 4th stay there, so we have become friends. At times, my Mom got me so upset that would go sit in the concierge lounge. The CM's were always there to support me and listen.

 

[SueM in MN]

Thanks for the report. I always enjoy hearing how things go.
I think you're right about the "She does enjoy it even though she says she doesn't".
One of the other things that goes along with dementia is being more confused, agitated in unfamiliar surroundings. You may find that for your next trip, you need to bring someone else with you for safety and just so you don't wear yourself out.

 

[SharonS]

I have thought about that, but I wouldn't want anyone else to pay for part of their trip and then not get to do everything, or have to do it by themselves. I'm not sure if I can afford to completely pay for someone else's trip so that they will be at my call.

Also, it may sound strange, but I really want it to just be the two of us, since I don't know how many more trips we have together. I'm afraid it would feel like someone else was intruding on our time. We are going in May for her birthday, and I think for that trip, we'll just go it alone. Perhaps for the August trip (Disneyana), I would consider either having someone else go along, or paying someone to stay at our house with her.

I don't think at this point safety is an issue. My Mom has never wandered or anything like that. It is just the agitation. I asked her the other day if she gets worried when I go on a ride, or if something else in the parks bother her. Her answer was that the parks are boring! So....I know that some of the miserable behavior when she is in the park is because she just doesn't want to be in them and she thinks it will get me out.

 

[teri]

Sharon.... Happy Birthday. {{{{{{hugs}}}}}}}

You should most certainly talk to your doctor about the observable behaviors your mom had during your trip - the agitation, irritability, avoidance of challenging situations (like the parks), disorientation, and possible anxiety of being outside of routine might be something that can be relieved somewhat with medication, so you can both have an easier time. Clearly, she returned home with good memories, so she felt she benefitted from the trip overall. Sounds like you got quite the emotional workout, though. {{{{{hugs}}}}}

 

[Sandiebean]

Sharon..

I want to just say you are amazing and wonderful. I love how truly great you are with you mom. I lost my mom and best friend when I was 24, and it was so horrid. She was also ill (though not with dementia).. and I was primary caregiver. Just the two of us. Some days I thought I wanted to die. Some days, I couldn't imagine not having her in my world. (Most days, as a matter of fact). She was awesome. One day, when you no longer have your mom.. you will look back on these times, and hardly see the angst.. and you'll have no regrets. And you'll still have you WDW, and so many more memories that make it even more magical. I'm sure I'm rambling here.. but I just had to say something. It's an age when people aren't always so willing to sacrifice part of their lives or their world.. or themselves. But there are still people like you that are giving and loving, and are willing to make the sacrifice. Thanks for sharing your trip, and your story with us.

Sandie

 

[SharonS]

Thanks Sandie. I often go through what you descirbed. Sometimes I think I'm going to go crazy and don't think I can stand it anymore, yet I think about not having her, and that is worse. My Dad died of a massive heart attack when I was 24, so it has been Mom and I ever since. Like you...she is my best friend.

We have an appointment scheduled with a neurologist, but it isn't until April 4th. I'm hoping he can give her something to help.

Thanks everyone. I know that many of you are also facing challenging situations, so you can understand. Unfortunately, many of my friends just don't get it. They can't see just how difficult it is, so I really don't bother to say anything to them. Being able to just share it with people that understand makes a difference.

Sharon