in need of advice for visit

[bluecat]

I am preparing to visit my brother who lives out of town. He was diagnosed with ALS a year ago. I plan on spending a week to help out wife who probably needs a break. He is in a power wheelchair and his voice is a little weak. Any advice on how I should support or what I should probably expect. I am trying to prepare myself mentally and emotionally and I must admit it is very hard

How should I carry on with a conversation and how will I know if he is to tired to speak

 

[Nikki J]

I am sure they will both be happy to see you. Ask his wife how you can best help. If she is the sole caretaker she is definitely in need of a break. If he is in a pwc then he will need help in transfer. They may have a lift. Ask to be trained in their transfer methods right away assuming it is something you can physically do. If there is a lift almost anyone can do it unless you have a significant disability yourself
So allowing her to get out with friends or errands or whatever would be great. Cooking and cleaning also. If you have time maybe cook ahead for the freezer. And just hang out with him. Treat him normally. Try hard not to say what if you don't get all he says. Repeat what you think you heard
Have a great visit

 

[Nuts]

Nikki is right on with her advice. His wife might not know what to ask you to do--that happens to me sometimes and then when the visitor leaves I think of a dozen things he or she could have done. Cleaning (vacuum, wipe baseboards, dust the things that haven't been done in awhile), yard work perhaps, wash the cars...all of the things we do automatically in our lives she does not have time or energy for. I'm sure she'll put herself out to clean before you arrive, but there will be things that she can't get to. Taking him out is a great idea--it gives him an outing and her time for herself. I don't know how close you are, but if you can point blank ask if he needs help tolieting, do it, and then do it. Cook for them---I LOVE it when visitors cook for us. I haven't the energy or interest.

Expect to keep yourself busy if they retire early, sleep late, or take naps. Let them know it's ok. I think one of the biggest shocks our visitors have is how little time they really have to socialize compared to the past.

Enjoy the visit, and most of all, treat him like you always have.

 

[Atsugi]

I agree with all the above. They need physical help. Do the laundry. Especially do the heavy work that they can't.

For conversation: you don't have to fill in the silence. Everybody knows you love him. Sitting quietly with him is AOK.

It's good that you are going. Courage means doing the right thing even though you're scared to.

 

[affected]

Get lots of sleep and eat really well.
Then be prepared to have a really full on week with gusto.

I like the idea to take frozen meals with you if you if possible - but check dietary issues with them, he may need soft foods.

Ask his wife to be ready to hand lots of jobs over to you and be ready to learn on the fly and encourage her to get out of the house a lot. If it's scary for you start by having an hour alone with him the first day and build it up over the first few days til maybe the wife can take a whole day off.

Good on you for going to help - the only people who came here to 'help' ended up making more work for me and I couldn't wait for them to leave.

 

[Rounder78]

I agree with all the comments above. My Mom was recently diagonosed and I have visited a few times. I try to act as normal as possible and help out with whatever I can for her or my Dad. Small things like mentioned above are things that don't spring to their mind to ask for help, but need to be done.

It is very difficult to see a loved one like that, but try to act normal if possible. If you need a moment for yourself, take it outside of their presence. I tried my best to not let my Mom see any emotions as I didn't want her to feel bad. I tell you that because I thought I was prepared and I wasn't. But it got easier. They know they are sick so they don't need pity. As Nikki said, hang out, watch TV, do whatever they like and just blend into their day to day. Most importantly, cherish that time!

 

[Nikki J]

Which brings up a good point. It was unclear as to whether you have seen him recently. If you have not it may ( or may not) be a terrible shock. I can not imagine seeing my sister now if the last time was pre-ALS. It might actually be worth
Watching a couple of videos of PALS if you are unfamilar with the disease. It is fine to show emotion. After all you love him but being prepared can't hurt

 

[bluecat]

Thank you to everyone who posted a reply to my request. I really do appreciate your tips and suggestions. My history with my brother is a little different. He was placed for adoption as a baby by my mother and he was able to find my mother and I over 10 years ago. So we have really being getting to know each other for the past 10 years. He is my brother and I love him dearly and I hate the fact that he has this disease.

He did not harbor any hard feelings about being put up for adoption and wanted to reach out to his biological parents for family and medical history. The best part is that my mother and he became very close and as well as myself. My mom passed in 2004 , my brother came up to the funeral and even helped me with the funeral arrangements. For ten years, my brother and I have became very close and I also have visit him and his family. He was diagnosed over a year ago, he is doing okay, his voice is a little weak but he is able to talk. A year ago, he was walking and was able to eat by mouth but his wife would have to feed him. Now he is on a feeding tube and in a wheelchair.

I am looking forward to seeing him and I want to do what I can to help out and I will follow his wife lead and ask what needs to be done. Since I do not know how much he has changed, I will take the advice of watching a video of a person with ALS.

I am nervous because I want to act as normally as I can when I around him but it will be hard . I do want to be a help to them and not a burden since she also have some health challenges as well. She has Lupus and I know stress and Lupus is not a good combination.

I was thinking about getting a gift card for a massage at massage envy for his wife since I know that massage envy franchises are located in each state.

Thanks again

 

[davbo49]

don't ask how he feels. just be there for him

 

[lgelb]

Here are a few suggestions, Blue. Make it clear as soon as you show up, to both him and his wife, that you are up for anything that will help and that you're not saying that out of politeness. Say, "put me to work." But, as others have said, be comfortable with white space, too. You don't need to act "normal." ALS isn't. Just be yourself, a sister and sister-in-law.

Get oriented on his feeding tube. Ask if they need any help/research/perspectives on hardware/software for the assistive tech he will need as his voice gets weaker. Set up one of their devices for video calls in future, if they haven't been, and enter your number. Take note of his breathing and encourage them to look into a BiPAP if it seems difficult. Encourage one or both of them to join us here.

Ask his wife how she is doing, away from her husband, and if there is anything you can do for her particularly. Thank her for taking such good care of your brother.

I wouldn't worry about gift certs until you see what they need most firsthand. Wheelchair massage is a little different. Your time with them and ongoing support once you return home are worth far more than anything else you could give.

Best,
Laurie

 

[bluecat]

My visit is going well . He is in good spirits. I have been helping with cleaning up the kitchen and doing the dishes. He is in a powerwheel chair. When we transfer him to the bed, we need 2 people to do the transfer. Are there any type of lifts or machines that can help with transferring him to bed? He is not really able to stand even when we hold him.

My sister in law is doing a wonderful job with him. He is on a feeding tube in the evening and in the morning and he gets a bolus during the day with his formula and with water to flush. I am learning a lot on what to do. I have assisted with the bathroom as well.


Are there any low cost crushing machine by chance. She has one but you have to twist the cap to get it crush the pills.


I am feeling a little better and more comfortable. I am planning on looking into some flights so I can come to visit again. I thought that FMLA covers siblings but it look like it only covers spouse, parents or children.

His breathing so far is good as well. If you have any other tips, please let me know

 

[Atsugi]

They should get a patient lift, often known by the popular brand name Hoyer Lift.

Using a Hoyer Lift, my 13-year-old girl was able to single-handedly move mom (totally paralyzed) from bed to chair around the house.

 

[affected]

Blue you are doing great!

As Mike says a hoyer type lift is essential. It is safe for both parties and so easy to use single handed.

I used a mortar and pestle to crush meds.

 

[Nuts]

Ditto what Tillie said--you ARE doing great!

Another thought--if your brother and SIL don't know about lifts, they need a lot of information. Why not suggest they join here? I learned most of what I know by reading on this site. Another low cost option for transfers while core muscles are still strong is a slide board.

Keep up the good work!

 

[DreamsEnd]

It was great to see your concern and your family history. That you're feeling more comfortable is wonderful. All of the suggestions above are great. How does your sister-in-law transfer him when you're not there to help. Most ALS or MDA associations have loaner closets so maybe you can borrow a Hoyer lift if finances are an issue. If your brother is a vet, there is all kinds of help.

You are a GREAT brother!

Sherry