Dealing with denial

[Didalju]

Morning everyone. Sorry it's a bit early to be ranting but SO need to let off steam but also genuinely would appreciate your honest opinions. So last night my parents informed me they are going on a cruise to Antartica in 2016!! I was so taken aback they rendered me speechless.

Antartica, honestly?? When I asked how this had come about they mentioned a name of someone they know (who I have never heard of) who has asked them to join them as there is a group of 6 going. My sister has also never heard of this name.

I have spent all night tossing and turning between getting very angry with them versus thinking who am I to squash their dreams? Dad's decline in the last 12 months has been rapid, particularly cognitively. Incontinence has started , regular choking (I got showered with coffee sitting opposite Dad yesterday as he choked bless him), eyes closing (Botox treatment becoming less effective) and 2 falls to date. My parents absolutely refuse to even utter the letters PSP. They are in complete denial. I am in charge of their financial admin and arranging all health visits, my sister does the daily popping in to see them as I don't live local to them. Dad's fragility so upsets me and yet I know he 'd love Antartica. But how do you support your parents to live out their dreams when you can't even get them to talk about needing carers in the future? It took me 9 months of nagging to get my Dad to go to the neuro rehab clinic at their local hospital as both mum and dad didn't think it would help!! There will have been no talk of how Dad could handle it, what support they would need because they think they are fine as they are! And also I hate to think how much this will cost? So many questions in my head but I can't talk to the people I need to most - my parents. Any advice greatly welcomed . Love to you all Nicky x

[LynnO]

Good morning Nicky,

I feel for you during this added struggle. Everyone always says do as much as you can when you can. Make some memories. I agree with that to a point. My husband (PSP/CBD) wants to take a trip to Alaska. I have always wanted to go too. His cognitive ability as of late has gotten worse, but there are still some clear times of the day. He doesn't drive anymore so it would be me doing all the navigation. His balance is way off, and he gets tired and confused very easily, along with a host of other symptoms. It really sounds like a lot of work, and I'm not sure I would enjoy much of it with the stress of worrying about him the whole time. With that being said, I let him dream about it and plan what he would like to do. I really don't think we will make the trip, but it gives my husband something to look forward to. It sounds like your parents trip won't happen for a year or so. A lot can happen in that time, and hopefully by then they will come to grips with the disease, and if they still want to go, maybe a friend you know, or a family member can go along. Not sure what deposits and how far in advance they would have to be for a trip, but since you're in control of their finances, then maybe you could control some of that. As far as you sister and you not knowing these new friends, I would find out as much about them as possible to make sure your parents are not being taken advantage of. I don't know how old your parents are, but my experience says that this is NOT how retirement should be or how you planned it, so some of their denial might be stubbornness of not wanting to let go of what they have talked about doing as they got older. I think I would just stay as involved as possible with the plans and gently and carefully remind them of their limitations because of this disease. Easy to write, but very difficult to do. Good luck.

Lynn O

[Georgepa]

How about pointing out that they will not be able to get travel insurance- if they declare the illness it will be turned down and if they don't declare it and something happens then the insurance company will eventually find out and turn down any claim . It sounds cruel but maybe you have to be cruel to be kind . best of luck with it . I am probably the same age as your parents and my daughter would hit the roof if I tried to take my wife who has PSP on a cruise .

[easterncedar in reply to Georgepa]

They may be able to get insurance if they declare the psp, AND have a doctor who is willing to assert that your father was fit to go when the booking was made. That's what we have done. Quashing the dream is very hard to do. I do feel for you. It's an awful situation you are in right now.

[anniemay]

All good comments in previous replies, insurance being the major one to arrange, but if the trip can be arranged safely let them go ahead! My husband is in a similar place mentally and physically, and a sufferer for over 10 years (first diagnosed Parkinsons and then in 2007 diagnosed PSP). He wakes up each morning and doesn't realise he can't get out of bed, walk or get dressed without help! Its like groundhog day for the last 5 years - things have not altered that much, actual improvement since off the "nasty" medications, especially continence, but eyes have done the botox route and are now closed 90% of the time. However, he can still experience the anticipation of travel, being in a different environment, and meeting new people. We still eat out a few times a month, usually I try and get a place where he is facing away from most people so he doesn't put them off their food. We go away to see friends/family in other parts of the UK and Ireland every couple of months. Yes its a huge job to plan it but always stay in hotels with disabled facilities and staff are generally very helpful. For my part I don't have to cook or clean and its a change of scene. We can eat in the room if not up to going to the restaurant. Its not much fun sitting in a chair in the same place all day every day, with only the TV or radio to listen to, and who knows how long this will go on. I know my husband would rather go out of this world choking on a piece of steak and a glass of wine than be bedridden and tube fed!

Think of the person still in there - we all have to have something to live for!

best wishes

[Hidden]

For me the most important part of your post is the denial. If you can deal with that then other things should fall into place. Maybe your siblings would agree to a visit during which you can all talk to your parents together. Everyone goes through denial but in your case it seems to be going on for far too long. So why not try and organise a 'family get together' where the issue is discussed and hopefully resolved. There may be other close friends/relatives of your parents who recognise the situation and could also take part. Good luck.

[jessybx19]

2016 is a whole year ahead of us and i don't want to sound like a Debbie Downer but that trip needs to be reconsidered. Yes you want to make the most of everything but this damn psp can change life very rapidly. Last year my dad was doing some talking, laughing, holding. Fast foward today he is bed ridden. He barely says anything. we are very thankful he is eating but thats about it. I say this to say if he is able things that needs to happen now because if they invest on this trip it may be a waste of their money. My parents were caught up in a similar situation and within a few months my dad was unable to travel. Have your mom, your dad think about where he was about a year ago. Think where he is now. Think where will he be next year. This disease is real and cruel. Help them figure out other ways they can enjoy the now.

[jimandsharynp]

Nicky, Tough situation you are facing. Each family is different and there are probably many ways to deal with this type situation. Perhaps some ideas will come from this group. Jimbo