Happening too fast

[zoohouse]

My husband was diagnosed 7 months ago with ALS, the same month as our 1 year wedding anniversary. It has almost been a year since I first noticed his first symptoms. He is American and I Canadian, and we have been going through the immigration process, of him coming to Canada. We lived separately as that was the fastest way, but I knew when he was diagnosed that he would have to come before attaining his permanent residency. Because he was in the airforce, the ALS is considered 100% covered through the VA. I don't know what we would have done if this wasn't the case, although the BC ALS society has also been extremely helpful. The home I own is a split level, we decided to build a home that would allow Tim to get around in, and stay in as long as he can. When he came in Oct. he was able to get up and down the stairs with only a bit of problems. This has changed considerably, in the last couple of days, and we are 3 month away from completing the other house. A stair climber is not really an option, as the stairway is curved, so the expense is too high. I have continued to work, as he has been able to manage on his own, but now I am not so sure. I am a nurse, and it is a blessing, and a curse at the same time. I have been able to help him in many ways, but I also expect more from myself than another care giver. My family and friends have been so very supportive, but there are days that are overwhelming for both of us. We are so thankful that at this time there is no bulbar involvement and pray that it is a long way off. Today has been one of those extremely difficult days, as we work on the paper work for immigration, having the VA cover expenses in Canada, and building a house, and selling this one. I can manage all of that, but am having a hard time watching an incredibly independent man struggle to stay that way, while his body betrays him. I am a physically strong women, but he is 6'3" and 212lbs., and difficult to get off of the floor when he falls. I will be trying to get a portable lift into the house, but again the stairs are going to be a problem. I just don't know what to do now. Any advice would be appreciated.

 

[Cricket]

Hello
I wish you the very best in this journey.

Here is what we did: We converted our living room into a bedroom. To add privacy we put in doors. I haven't been uptstairs in 6 mths but I am happy to be able to navigate around the house in my pwc. I hope your husband has access to a bathroom and shower on main floor. Hopefully you can borrow equipment from the ALS loan cupbard even if it is to try it out before you need to buy something. Like you said, a lift is a good idea.

This was what I found the most difficult- knowing what i might need, when i would need it so that i am ahead a little, and finding the right equip. I found it very helpful to ask other pALS and people with spinal cord injuries. One of the best gadget I invested in was a toto washlet (toilet seat bidet with a wall mounted remote ctrl). Please accept my appologies for being so forthcoming but this was the one thing i wished my OT could have shared with me if she would have known. I had to do my own research.

I am sure others in this forum are more knowledgeable and could help you more than me.
Best of luck and take care

 

[machaffi]

As a pal I want to say thank you for supporting your husband. But since he is a veteran he is entitled to some home nursing ask for that help so you don't were yourself out. As for the stairs the ideal of a tempera arraignment on the first floor sounds like the best and safest option. May god give both of you strength.

 

[DawneO]

Also a nurse caring for a friend with straight bulbar involvement. You are right that we hold ourselves to a whole new standard- i hope we both can figure out how to be forgiving of ourselves. The lift is an amazing thing- a family friend has one for her hubby- he is post stroke. she is 5' he is 6'/ It is like a hoyer only more portable- she used to get him into BR and bed and transfers- could do it alone.
The downstairs bedroom is the only choice if you cant go up.
If he falls, see if you can slide him near the couch or stairs, then if you and he can scoot up a step or two you can get him back on his feet.
To slide him in car seat: get a hefty garbage bag- put on the seat with the open end toward the door. WHen he sits on the bag, you will be able to slide his legs in the car without a struggle. I used with my mom- post stroke- it is a miracle.
Good luck
Dawne

 

[zoohouse]

No apology required, only a thank-you. I had been wondering about that all ready, as I notice Tim struggles to get to the business end of things. Since we are building right now, all options are open. Does this seat bidet have a dryer? It seems to me that this would be the way to go rather than a separate bidet, as there is fewer transfers. The family room is on the same level as the door, and a bathroom with a shower. But the shower is small, and I don't think there is room for him to sit in it. He is having a lot more difficulty standing and there is no way to put bars in there, as I don't believe there is appropriate support in the walls. I know that he wants to be in the same bed as me, so I guess we could move the bed into the room and I could sleep with him there. The next 3 mos. are going to be the most difficult I think. We are both really looking forward to moving into the new house. We may have to find an apartment that is ADA adapted to live in until then, but Tim is resisting that. He is one of the most amazing men I have ever known, and I know that both of my boys already love him dearly. He is on a road trip, starting today. My oldest son, a friend from our church and Tim are flying to Dallas today to pick up his truck and drive it back. It has brand new winter tires on, and two Canadian drivers use to driving in the snow, so I am confident that all will go well. My son is a paramedic, and the friend is a bus driver that was a care aide at one time, so they are trained to deal with Tim's special needs. I believe that this trip will be something that both my son and he will remember and cherish forever. Thank you all for your replies, and I know that your advice is well informed. So few people know the idiosyncrasies, and that included me, of this particular disease. His brothers are telling him to work out, and making suggestions that are just not feasible. I do wish we had access to a pool for him to swim in. The recreation centre here is excellent, except the water is too cold, and he cramps up in it. I have been hoping that we can afford one of those pool spas so that he can swim daily at home, or just enjoy the jets and warm water. There are just so many things to consider, and to learn.
Paulette

 

[zoohouse]

Thank you for the replies. The bidet idea is one that I have been thinking about for a while, as I have noticed Tim struggle to clean the business end of things while sitting on his bath lift. Obviously it is easy for me to do it, but he is fiercely independent and would like to do as much as he can for himself. As we are building a new house, options are open, so any further suggestions are appreciated. Tim's on a road trip with my son and a friend from our church. They are flying to Dallas to pick up his truck, and drive it back here. We will be trading in his truck for a van that will be converted. My son is a paramedic, and the friend a bus driver with care aide experience, so I know he is in good hands. My son has taken Tim's ALS hard, but has been an amazing support. Considering that Tim and I have only known each other for just over 3 years, I feel so blessed that they have bonded so closely. But then Tim is an amazing person with a heart that glows, and my son also is such a loving person. I believe that Tim and I are together for a reason, and this terrible disease will allow a lot of good to happen.

 

[momap53]

In the US you can call 911 for non emergency assistance in picking him up. Check with your local EMS or fire dept.

VA also provides grant s for remodeling and an accessible van.

Lots of tips in archives for build or remodel. Check out member Mare f or Photos and tips.

 

[Ms. Pie]

ALSA can help you out. They have loaned us a ramp, and a bed cane that helps me turn in bed. You will also need a commode riser, the bidet on the toilet seat, manual wheelchair for transport, gait belt and ALSA can tell you what else he might need. Good luck! You are wonderful to stand by him.

 

[momap53]

ALSAand MDA offer wonderful Caregiver Guides, just register with them. MDA guide is my favorite.
Both offer news online in your email box.

 

[zoohouse]

He has 2 wheelchairs, 3 walkers, a turning rail, and riser for the toilet. We are in the process of building an ADA approved home, but it won't be ready until May. His motorized wheel chair should be arriving any day now from Ohio. The VA and the ALS society has been great. They sent us a ramp to get him out the door, and will be sending a mobile lift, and bedside table. It is just that our current house is a three way split, with no bathroom on the main floor. Thankfully the steps are not very steep, and are a little bit longer or else he wouldn't be able to do them at all. I just keep praying that he stays strong enough for the next 3 months until everything is all on one floor and room for lift transfers. I believe I had better get on getting ceiling lifts for the new bathroom and bedroom now, so they will be able to be put in right away. It is so wonderful to have this forum to get info at.
There is nothing special about me standing by him, he is an amazing man. He saw a beautiful cake on face book, and decided he would get one made for me just like it, in the flavours that I like. He had my son pick it up, and it was waiting for me when I got off work last night. Black Forest, with cream cheese icing, in the shape of a heart, with choclate dipped strawberries on top. He has my heart forever, as his heart is richer than that cake. I just want his life to be as rich as I can make it.

 

[notme]

HI

First, let me apologize if this has already been said. I did not read all the posts, just the first post. I have a hard time reading currently.

I noted that you said you're having trouble picking him up when he falls. That concerns me. Why is he falling? Is he resistant to using a wheelchair or a rolling walker? Does he fall during transfers? Falls are a huge risk for PALS and if he's falling, he needs to avoid whatever is causing the falls, of course.

As a nurse, you may or may not know how to use a hoyer lift (I know NAs know, but most nurses never really need to use them if they work in hospitals) but if he's falling during transfers, it might help.

As for showers of course you're going to want to build a nice large one in the new place--and have a toilet with a bidet with dryer if that's possible. Also rails and it will need to be a tad higher for him to use it easily I'd think.

For beds down the road--you might consider one of the nice adjustable kingsized beds that will allow for his side to be in whatever position he needs while your side is whatever you need. He may get to where he needs a standard hospital bed down the road...but that could be a long time if the bed you find now is adjustable and if rails can be installed for his use as needed.

Even in small showers, you should be able to fit either a small shower chair or even a bedside commode so he can get showered without the risk of falls. If it's close enough, perhaps a transfer board to get him into a wheelchair, or even onto the commode for transfer when he's done. (In some apartments, the toilet is inches from the rear of the tub)

The first floor in your home might be an option while you wait for the new place to be done. Perhaps a portable ramp to get him in and out of the house while you wait on the new one could be used if stairs outside are an issue. I doubt it would be cost-effective to build a ramp if you'll be moving rather soon.

I'm so sorry you're having to deal with this--but am glad that he has you and that he will have access to the VA benefits. My best wishes to both of you.

 

[zoohouse]

Thank you for the great info. I have been looking at bidets, and have decided that that is the way to go in the new house. We have designed the house to be as accessible as possible for Tim.
His falls are not often, but do involve the stairs. He has been very resistant to moving to one level, but I think he is finally getting that it must be done. Thankfully, I have been with him when his leg gives out, and have been able to lower him down uninjured, but once he is down I couldn't get him up. The ALS society of BC sent a lift, and I am familiar with using it. But they also had an occupational therapist come over to make sure. They just sent a commode, and slider as well so he does not have to attempt stairs if I am not there. My son is amazing and has always come to bring up the stairs when he is feeling weak. The kid is built like a bull and piggy backs him up and puts him into the bathroom before he goes to bed. I have spoken to him about having some of his friends come over and clearing out the family room, so that we can move the bed there, and set up a little fridge, and micro wave. Some days I just feel so overwhelmed, as it is so hard to watch the person I love struggle so hard. I don't mind doing for him, it is like my life has been training for this time. He is such a gift to me, and we enjoy every minute that we have together. I just pray that the next 2 1/2 months goes quickly and that he doest deteriorate too much. Once in the new house I know things will be easier, more safe. Also thanks for the info on the bed, I have been thinking about that. We have a king, and I put a handle rail on his side, which he finds very helpful. We want to sleep together for as long as we can. He says that when he is laying down he almost forgets he has this disease.

 

[marypat]

we have a folding portable ramp that we use inside the house or outside. if you interior steps are not too steep this might work until you are ready to move.

 

[MLOx]

One comment on the shower option, you said it was small. There is a great shower chair buy Shower Buddy Chair with TIlt. We got one for my mom, what was nice is that it has a tilt to it so that when the torso is weak you can let gravity help by tilting it back a bit. But you need to be able to roll into a shower, which is the easiest way to go even in a small space so we remolded the shower a bit to make it a small lip, then a slight ramp to roll mom into the area. If you are building and can just add a ramp --onto a platform or something that might work best.
Monica

 

[notme]

Hey

The single floor will be much easier on you--and him, though he might not realize it yet. They make king-sized beds that adjust differently on each side if you both want to be in the same bed. Craftmatic is one of the brands. It adjusts--and I'm sure there is some way to add rails to them. (I've seen bed rails even at Walgreens)

Good luck with the new place!