Planning for the next phase. Help!

[Atsugi]

Lately I've been wiping my PALS behind on the toilet. Soon I know I'll be brushing her teeth and feeding her. I wonder how we're going to care for her when her arms and neck become totally limp.

We want to stay at home-no hospital, no vent, no tubes. What shall I plan for?

Background: My wife noticed a foot-drop in November, got diagnosed in December, needed a cane in January, a walker in February, and became permanently wheelchair-bound in March.

In April, she found that her abdominal muscles couldn't sit her up when her saliva overwhelmed her breathing. In May, her right arm became useless. I don't think the left arm will feed her past June.

Again, my question: What are the things I need to plan for? When your PALS is nearly locked-in, what is life like for the caregiver? Can this be done at home?

 

[Jellycat]

Hi there Atsugi,
I'm sorry to hear of your wifes diagnosis. It sounds to me like a lot of adjustment for you both in a short time. I read your post this morning & have been wondering how best to respond. Others may chime in with their thoughts but here's a few of mine for now...

You ask if it's possible to look after your wife at home. I think only you two will know if it's right and possible for you. But yes it's possible. Many on here are doing just that. BUT I would encourage you to consider getting help, whether from family, friends or professional carers. The time will arrive when you won't be able to do everything for your wife, no matter how much you want to, no matter how good you are.

Just as each pals progression is different, I suspect each cals also has to find their own way of adapting and caring. I chose and was able to scale back my work in order to take care of my mother, so that she could remain in her own home. I don't regret doing so and at the same time it is certainly the hardest thing I have ever done.

In terms of planning ahead, I think equipment is a Godsend. The most important items for me have been a hospital bed, a good powerchair, a hoist, a commode, suction machine, sliding sheets for bed. (My mothers list might be different!) But there are other things out there too. For instance adapted cutlery that might enable your wife to feed herself for the longest time possible.

Since each person and their needs are different, I'm wondering if you have an occupational therapist who could visit your house to advise and see what might best help you.

The folks on here are wonderful. A font of ideas, information and support. I hope you find youself at home. Message me if I can be of any help.

 

[Ladyinn]

Welcome to our world! Sorry to have to meet you under these circumstances. You will find a wealth of information on this site and a group of friendly people who can give you ideas of what they have found helpful. Just ask...nothing is off limits.

I have an OT coming in this morning to arrange for a bidet since I can no longer wipe my behind. I have an adjustable bed, transfer poles at bedside and in the bathroom. A seated shower with handrails, and arm rests at the table that are a help in getting food to my mouth. I drink from a straw. I use a walker in the house and a wheelchair when we go out. I have apowerchair waiting in the wings.

In January I became a hospice patient - more for my caregiver than for me...although we are both benifitting from the extra help. My quality of life is greatly improved with their help and my caregiver is less stressed with the help and comfort they provide me.

Please continue to visit us and use whatever tidbits of knowledge and experience that you find jhelps you and your wife and throw the rest away! We are all at different stages and places and there is no right or wrong.

Good luck and God Bless,

Diane

 

[rmstudier]

One thing about toilet seat bidets is that the user must be able to reposition on the toilet seat in order for the water stream to hit the target. Being set on the toilet by hoyer sling doesn't usually put one accurately in position.

Just sharing....

 

[cukita99]

i havent been able to care for myself in four years but i enjoy been at home. yes it can b done. i have a care taker m-f n my son does weekends.

 

[Miss]

As everyone says, it can be done. I am the sole caregiver for my husband. Equipment is the key. What do you have? The folks here will fill you in on what you will need.