Money Does Not Grow on Trees

[LornaDoone]

So, we have decided to not get a wheelchair van. And my PALS is NOT happy. Quite upset. We just feel that the expense is not reasonable at this point in her illness. We should have considered getting one a year or two ago. But she didn't want one. She thought the expense was too much.

At that point, transfers weren't that hard on her. Just those that had to transfer her. She is a selfish person. Even before the disease. I digress. Now transfers are hard on her.. It's amazing how exhausted she gets being shuffled around. You'd think it'd be easy on them cause it appears like they do nothing, but get lifted and moved. Seeing how exhausted she gets and how taxing her breathing gets, that's clearly not true. So, now she wants one. Keep in mind she refuses to use public transport that is free for her or accessible taxis.

But now we dont think it's financially wise. She gets out so little. And while we are very fortunate to be able to afford everything we need, we do not have unlimited resources. We are very creative with what we have. She is feeling like we do not value her life anymore. All sorts of sad things she's going through.

But she's got to understand that we have to support ourselves after she's passed. We can not take her on whatever vacation she wants. We can not buy every little toy and trinket she may want. And trust me, I treat her VERY well. I take her on a trip to the local mountains for a few days instead of to Tahoe in California. I took her for a local spa visit and used an Entertainment Book coupon. This instead of going to a spa resort a thousand miles away. Seriously lady.. You got it good.

So, I feel I'm justified in not buying a van. And I dont even think I feel bad about it. I'm in the minority in this decision. We have other family members with ALS that could use the van. My opinion.. let them buy it.

We are probably the family members that manage our money the best. That has caused us to be able to live a little better than many of our relatives. I do not feel any obligation though, whatsoever to finance this thing although we could. I feel like I already do enough. You'd think I run a freaking adult day care and get NO money or compensation. Nor do I want any. I am very fortunate to be able to stay home and care for my children and help out the family. However, I would not be able to do so if I did not manage my finances the way I do. *shrugs*

I feel like I should be feeling a little more empathy than I am right now. I am feeling very matter of fact about it. Kind of ashamed of myself. But, money does not grow on trees. And I will not be your gravy train at the expense of my immediate family's future. Sorry.

 

[LizT]

Lorna
sounds like you are right on track! you dont need to feel guilty because your thinking is correct. and she does have other options to get out, just refuses to use them. there is no sense in using up resources that need to be used in other areas. maybe something could be worked out that if someone else in the family gets one, your PALS could have access to it every once in awhile too.
I think youre being matter of fact about it because thats what needs to be done.
like you stated, youve handled your money a little more properly than some others in the family- not your fault and you surely dont have to make up for their mistakes.
Good for you for standing your ground!

 

[Tokahfang]

They cost a fortune. My husband and I could only afford on on a 10 year loan, and I can't imagine saddling him with 10 years of car payments if I don't make it so long!

We had given up to, but put out word to the local charities and churches. I was very blessed, a fully paralyzed man with MS decided he didn't use his enough to make it worthwhile, and was looking for someone to donate it to who would use it. It ran and had a lift, which prices it at about 10,000 dollars, but he gave it to us for free. It isn't pretty: its a 1985 ford econoline, and it looks it! But after just $1500 of repairs it run reliably in a half hour radius around my house, gets me to church and the doctor (our local service doesn't work on sundays), and we can help people move with it. I can't sit up in my chair long enough for bigger trips anyway, so any more function would be wasted on me. After I'm done with it, we'll donate it to the next family we can find that needs one.

Not everyone can find that... but it would be worth putting out feelers, I think. It might make your home life easier, you can honestly say you looked, and you might actually get one.

 

[Madison1943]

Selfish? And she has had the nerve to get a fatal disease? The only thing wrong with her is that her caregivers resent her so powerfully. She'd be better off in a nursing home with even-handed reliable care. I wish I'd never read your post. Made me feel cold chills. Fortunately for me I control the money. I'll buy a van if I want. Sadly, there's no one to drive it, so the subject is moot. And while I had one I always hated the ramp and the ez-lock. I prefer a transfer chair to the van. It's not a panacea, by any means. And yes, it hurts being jostled and moved about. But everything hurts, not that you'd care.

 

[Marjorie R. Wilcox]

It sounds like she is getting very good care and consideration. We have to realize that things like an accessable van is costly. There are those who have one, that may be willing to take her on an outing once in a while..... but I sit here and think. Where does she need to go?
We talk about when the time comes that Rick can't get around and in and out of the car. We agree...... where does he need to go? We even say we aren't going to keep doctor's appointments then. We'll get a healthcare nurse in to check things over and bring things TO HIM
instead of trying to take him out. It was mentioned here that an outing makes her suffer with her breathing. I wouldn't even think of straining her breathing by taking her places in a van either. Of course she needs a little exercise and fresh air, but you can order take out food instead of going to restaurants, you can get church services on the television or internet, and visitors can come to you. There is an
exhausting list of activites that can be enjoyed at home. I think it sounds like heaven NOT to have to keep on the go in a vehicle..... Then too, she won't last forever and you'd be left with a van to sell. Some people move to an easier home, far away........ and when the patient
dies, the spouse is left there with no friends or family. It's best to fix up what you already have, than to go through all the work of a move
where you don't know anybody, just for a few months or a couple years of convenience.
I agree with Lorna Doone.

 

[LornaDoone]

I have to say that Madison's post got me a little upset. But I thought about things and feel good with how I treat her. I can understand that I may give that impression and will not argue it. And quite honestly, I do resent it at times. I want a fun life. I had to stay behind for her care last summer for 3 family vacations. Was disappointed the 1st time. A bit resentful the 2nd time because she refused to hire anybody. And completely mad the 3rd time. Most of you know that I have a crazy life. And I can get quite cranky. he he. That is just me.

Anyways, after a few days of drama with the van, things have died down. She has accepted the decision and has moved on. We bought a new puzzle and we are slowly working away at it. Amazing what that game can do for us. We can work on it for hours and say nothing. It's like our brains are communicating w/o voice. And when it's late and the caregiver comes to put her to bed, we hug and I leave. *smile*

I think my frankness about things is one reason why we get on so good. She is quite a difficult woman. Before the illness and moreso after. She has a kind heart and is clearly going through a lot. But, I will call her on her poor behaviour. I think she appreciates the honesty. I will never talk to her in front of others and am respectful about the presentation. She is used to most friends and family to cater to her every whim. I'm sorry, but I can't do that. I do not have the time, nor is it my style. I'm quite lazy and if I'm going to bust my tail for you, I expect you to do the same for me. With her progression, busting her tail is something like reading a story to the kids while I take a shower. Now she is not really able to do that easily.

 

[Marjorie R. Wilcox]

I like the things you just said, Lorna Doone. Way to go. You know your limits and faults and you are working with them. Best wishes.

 

[rmstudier]

I know that handicap vans can be rented. If rentals are available, they would be a good option for an extended trip.

 

[rose]

I know that handicap vans can be rented. If rentals are available, they would be a good option for an extended trip.

I was JUST going to say that! great minds.... but seriously, around here, the place that rents scooters also has handicap vans available. Set it up for a day, make it an "event" for her, see how it goes. Not even an extended trip, just a day out, sightseeing or whatever. If it works out, it would be a good compromise for all.

 

[pepsiman]

I logged on yesterday for the first time in a long time only to see this thread.

LornaDoone, I don't think you should feel bad. For the few times you will get her out, you should be able to find a rental somewhere.

Liz was much the same in attitude as you describe your PALS. I did everything she asked. We moved, I bought her a van. We planted her a beautiful garden. She was a difficult woman, long before she got sick. She got much more difficult afterwards and I took the brunt of her difficulty. Everything she needed, everything she asked for, we gave to her. She died on me anyway.

Do the best you can, that's all you can do. It'll never be enough for some people.

Dick

 

[cukita99]

if shes able to use a computer she can do puzzle of the day. thts what i do.

 

[fba75]

Asking endlessly for one thing after an other goes with the disease. When you are not able to do anything by yourself, you have to “manipulate” other to do what you want. Without knowing it you are asking for more and more. Add frontal syndrome to that and it can get really ugly.
I got into this spiral without knowing it, doing one thing after an other without any sense. It ends up being impossible for me to do anything even sleeping more than half an hour. You can’t get very far at this rate, nervous break down come quickly.
It became easier when a nurse pointed out to me what was going on. Then I was able to put limits. There is what’s reasonable and what is not. It is not easy for a caregiver to see clearly this limit (especially when the caregiver is also the spouse) but it is manageable with external help (doctors, nurse, psy, social worker…).
I think it is normal to feel bad when you put those limits. It means that you care for your PALS happiness. Basically it is compassion. Feeling bad also helps you not to put too much limits, helps you discuss with other about what to do and no to do. If you did not felt bad, I guess you would not have posted here about that.