How do we help?

[georgianna]

This is the first time I have posted. I have been reading for a couple of months and I think all of you are fantastic people. My son-in-law was diagnosed April 2009. He is 30 years old. They have 4 little boys- the oldest is 8 and she just found out she is expecting. They are very excited and happy about the baby. I think it gives them something happy to look forward to. It seems to me that he is progressing fairly rapidly. Last Christmas he notice that he couldn't pull the trigger on his gun with his left hand. He is a policeman. He can no longer walk and needs help to do just about everything. He still goes to work once or twice a week and answers the phone and takes reports. The police force has been really great to help him. So far his speech has not been effected and he just started to use a bipap.
My question is--how do we help. I just feel so helpless. My husband remodeled the shower so that would be easier. I worry about my daughter as she right now is doing everything. They don't want anyone moving in with them or do they want to move in with us or his parents. We have a large family and everyone wants to do something but we just don't know what to do. He is such a great guy and we all love him. He has such a positive attitude and we all love to be with him.
If you could just give me some suggestions as to things he might like-Christmas presents? --things we might not think of, --things we could do for him that may not be obvious to us. Thanks so much and I cannot even express the courage and love that I have felt reading this forum.

 

[sesl]

You don't say whether money is an issue for the family. My mother (who lives alone) has ALS, my husband is away for work more than he's home and I have 3 children. I am spending all of every day helping my mother get to and from appointments with different health professionals. If I hadn't hired a cleaner for my own house some time ago I'd be tearing my hair out trying to manage my own home plus my mother's.

I'm very happy to help my mother - she needs someone with her to go shopping, to cook food, to speak to tradespeople, to visit doctors . . . pretty much for everything. I try to cram all that into the school day so I can be home for my children after school and in the evenings.

I would say that if you can do something for the family as a whole - pay for a cleaner or gardener or something, then that would help them a lot. They could still do the important things (like being with their kids) and have the non-important stuff taken care of.

Another thing, and this is more personal . . . and I'll tell you what has happened to me and why I think this is important. I have 3 sons, and they all play sports. My Dad used to come to their games and watch, which was great because their own Dad is away so much. It's ok to have your mother watching a game, but not quite the same as havin ga man to watch. Then my Dad died. Now my boys have just their mother to watch and it's just not the same as having a Dad there. I wish there was an uncle or older male cousin or someone who would take an interest in their sports and come to games and kick a ball with them like my Dad used to do.

I wonder if there are boys in that family and, now that their Dad can't be so physical with them, whether some other male family members could try to take a more active role in the young boys' lives. Do things WITH the Dad and the kids, but with an unspoken goal that they'll continue to be part of the boys' lives later when their Dad is not able to do any of those things.

sesl

 

[GlenBrittle]

Hi Georgianna,

First thing is to ask them. Yes , they will be proud and probably refuse , but it will come to a point where your daughter will need support too.

Little things will be the best , like watching the son-in-law while she goes shopping or has some free time to herself.

I find clothes are great presents right now as my arms and legs shrink , in my quest to stay the same weight , I am expanding.

Glen

 

[indigosd]

How fortunate for them that you are their Momma! sesl is so right on the mark. Those little boys will definately need a loving, involved, consistant and reliable male role model. Can you find a way to give them COUPLE time, a date night? Maybe a gift could be a weekend away just for the 2 of them? yardwork, housecleaning, taking the little ones to daycare or school, car repairs or routine oil changes, a listening ear and open arms for hugs! Even if they are not ready to ask for or accept help now, they will be at some point. You are a blessing to them!

 

[georgianna]

Thanks so much for answering my post. I do pay for a housecleaner, which my daughter said no no no and I insisted and now she loves it. They are OK for money--not rich, but Ok. He still gets his policeman pay. The boys uncles have helped a lot with the boys. I do feel really blessed that he has a very supportive family that is there for him and my daughter. They live closer than we do. We are about 2 hours away. It just seems like you just can't do enough, and it is hard when you don't know what to do. Thanks for all your suggestions and any more will be so appreciated.

 

[brooksea]

When you do go and visit, just look around. What do you see? A fence in need of repair? A sink that needs to be fixed? A tree that needs to be cut down? If your daughter and SIL are like the rest of us, they won't ask for any help. I don't think it's all because of pride. It's just that priorities are really changed now. So what if the house needs painted? If the neighbors hate it that much, have a paint party!

Since my husband has been diagnosed, I've a new appreciation for those that cannot do for themselves whatever the circumstances.

 

[Katie C]

OK, you already covered one of my suggestions, the housekeeper. Another suggestion... how about someone to do basic yard maintenance? I know those two things are our biggest "wishes" right now. Since the yard maintenance is mostly up to my son, who also is working, going to school and has a girlfriend, sometimes it gets away from us. The yard was one of Glen's great prides, and to drive up to the house and have it look just messy is kind of a slap every time.

 

[Katie C]

CJ... I'm totally with you about a new appreciation for those who just can't keep up! For some reason Glen has become very fond of the show "Clean House"... I watch those organizing/renovation projects and think wow.. if I wrote a letter explaining the last 2 1/2 years.. nobody would believe it! I want to get the house painted, hire someone to do basic yard maintenance, etc. In my spare time. So I think the answer to the original question is TIME... anything you can do to help give the family a little breathing room will be the best gift ever.

 

[shelleynshaggy]

I pretty much agree with what everyone else has said. Also, maybe get a "team" together to cook meals - maybe stock their freezer with meals. I have little ones - one thing I find is I need babysitters for errands, alone time and especially doctor's visits. Don't wait for an invitation just do it - some times by the time we swallow our pride enought to ask it's because it is the breaking point. So many people "offer" to help - but you are not sure what extent they mean it. My parents are supportive but I feel like I overuse them. Laundry, groceries, cleaning etc are all things on the back burner right now. If I have energy left at the end of the day it goes towards something with my kids or just sitting with my husband and watching tv. I think it will be a long time until my house is "normal" again.

Look for projects & improvements that need done around the house - the bathroom was a great idea. How about the front stairs to the house etc are they accesible - these are things I worry about, do not need yet but dread when I do.