homes

[nebrhahe53]

during our last visit to the ALS clinic we saw a variety of people. some were profoundly disables-unable to do anything other than moan.
My wife mentioned that she didnt think she would be able to care for me in such a state- which is where we would all wind up if we didnt die first, This makes me fear I will die alone in a home.
I know many of you CALS are caring for or have cared for, very disabled people. Have you ever thought of sending your PALS to a care facility?

 

[Nikki J]

Neil it is very frightening at first when you see people at later stages. It comes gradually so your wife would have time to adjust. If you can get an aide for part of the times it is easier. We kept my mom at home there was an aide to help. My sister is very advanced at home with aide help during the day. My uncle also was at home cared for by his wife. One aunt was at home until the very end when she chose an inpatient hospice for her last couple of days. Another aunt chose a care home early on
Is your wife talking about the physical or emotional part of this? If you can let her express her concerns. Maybe she could join the facebook CALS group? She could get feedback from other CALS

 

[affected]

Neil, I know I scared myself silly in the first couple of months after Chris was diagnosed by looking at stuff online about advanced stages and the care needed. I thought that there was no way I could do that in my own home with my own husband.

I did adjust, and learned what I needed as I went and did not peek anymore at things that were beyond me.

It's great that your wife has been able to voice her fears to you now. Does your clinic provide you with social workers? It may be worth taking your wife seriously and setting up some discussions with a social worker to really lay out all the pros and cons for your situation and allow both you and your wife to state your views and fears and get help in knowing what your strategy options are so that you can both be as comfortable with making decisions as possible.

 

[gooseberry]

Neil, When we went to the VA for Steve's assessment, I saw several ALS patients in much worse shape , at least limb and speech wise. It was very difficult for me. I went in the restroom and lost it. I had a pretty bad anxiety attack and he hadn't even been admitted for the 4 days yet. It is a shock at first because even though you know what to expect in one part of your brain you aren't prepared to actually see it.

 

[tripete]

Neil, I know this probably sound cold, but talk with an attorney as soon as possible if you have not already. We found out that if I end up in a home my wife could loose all of her savings in addition to anything that I have and our joint assets. We are considering several difficult options to protect her financially.

 

[MaxEidswick]

>Is your wife talking about the physical or emotional part of this? If you can let her express her concerns. Maybe she could join the facebook CALS group? She could get feedback from other CALS

very good advice ...

>I did adjust, and learned what I needed as I went and did not peek anymore at things that were beyond me.

same for us pals ... look at today, be thankful for what works and leave tomorrow to tomorrow

 

[gooseberry]

I I would like to say I would never consider the possibility of this for Steve and I will do my absolute best but I have to be realistic. We have talked about it. He doesn't want to die at home because he thinks it will affect our son negatively. Our son is so sensitive to things. But we continue to do everything we can to help Steve and keep him comfortable at home. The VA visual experience brought my denial to the forefront. I ache with the thought of seeing someone I love so deeply so ill.

 

[affected]

A word I would say about joining the CALS fb group is that your wife may scare herself there even more just now.

There are CALS there caring for PALS in every stage of the disease and asking for help on issues that you wife may not be ready to read. So unless she is really good a scrolling and only reading what she is ready for or asking her own question and only reading that thread ...

It's kind of easier here because you don't have to scroll through the threads, you can choose what to click on.

 

[MaxEidswick]

>A word I would say about joining the CALS fb group is that your wife may scare herself there even more just now.

good advise

>It's kind of easier here because you don't have to scroll through the threads, you can choose what to click on.

also there is humor here that really helps (no joke )

 

[lgelb]

Neil,
Having worked in health care, I have seen patients at all stages. It never stops being horrifying. But I would say to your wife (and will, if she shows up here), that when the patient who is moaning [in Larry's case, depending on the surgery, I dealt w/ blindness and psychoses] is someone you have known and loved, you don't hear moaning as much as you respond to the person you still see behind the physical limitations.

Your wife can't predict her ability to deal by looking at moaning strangers with ALS. I would find that as horrifying today, myself, as I did several years ago. The truest guide is the relationship that you have had over the years, not your health status now.

That said, it never hurts to buff up your social network and other tactics to improve future resilience. And since she brought it up, you and/or someone else she trusts might try to elicit what her specific fears are and walk through possible solutions, to force-test and hopefully reducee her doubts. You might also mention that there are reasons that more people are dying at home these days -- better technology, support services, access to help. Is it easy? No. Is it better than the alternatives? For many people, yes.

 

[skipper66]

My dad is in a assistant living facility in Dallas and even with VA benefits it is expensive as hell. I know alot of you are taking care of your PALS. But, not everyone is up to it physically or emotionally. You are not a bad person if you bail out of doing all the care yourself in my opinion. I think many of the CALS are taking on way too much and I commend them for it. But, I firmly believe that assistant living facilities were built for a perhaps and should be utiliized as such. Are you supposedto just throw your loved one into one and leave them there? No! You visit them as you can. Thereis still plenty of stuff that they will need done for them. But, my dad sure doesn't want to have his daughters or daughter-in-law taking him to the bathroom. Plus, we all have jobs. How some of the CALS work and also take care of their PALS I don't know. I just think all options should be considered first. My dad chose to go to the assistant facility on his own free will. My brother wanted him to live with them. He is only 5 minutes away from my brother's home which really makes it nice. Dad's facility is way plusher though then any nursing homes. But, it also costs over $6,500 a month for these accomodations. Dad wanted to stay here in our small town but the assistant facilities here weren't qualified to take care of a ALS patients and we couldn't find any agency or individuals who would even consider taking care of a ALS patient. So, he is in Dallas. He gets great care there from the ALS clinic and VA clinic there. Does he miss his home? Hell, Yes! But, he has adapted and is making the best of it.
I feel his wife is being brutally honest and is scared. She truly might not be able to handle it and shouldn't feel quilty if she can't. I hope I have not offended anyone by this post. Just voicing my opinion. Doesn't mean I'm right.

 

[affected]

Kim may I ask about this facility?
As an assistant living facility is there a cut off on the care/assistance they can give as your dad progresses? Does that mean he would shift to a nursing home later?

These facilities in Australia are quite wonderful but I know they are only for assisted living, meaning the person needs to be mostly capable of their own care.

For a slow progression they could give a couple of years of great QOL.

 

[skipper66]

The facility that my dad is in now has several different floors. He has his own little apartment right now. I think when he progresses even further he will be moved in the facility and then it will be more like a nursing home. But, dad is unable to do anything for himself at this point really. He still managed to feed himself but he is losing almost all movement of his hands so that will be coming to a end soon. He can't walk, dress, or even comb his hair by himself.
The facility would do it but the VA pays for someone to come and give dad his baths. My brother/sister are responsible for setting out his medicines. The facility has to take him to the rest room, feed him, and transport him around.
I would assume we would maybe move him into my brother's home if he rapidly declines and he would pass away there. I really don't know what their game plan is. Dad is thinking of putting his home here on the market because he doesn't feel there is anyway he will ever be able to come back here to live and get proper care. ALS truly sucks!

 

[gooseberry]

Kim, You certainly haven't offended me. My sisters , brother, and I tended to our parents and sister while they went thru the chemo/radiation/stem cell/clinical trial process for their various cancers. I have never been trained as a nurse but I can do an awful lot of different nursing tasks so that helps me in caring for Steve. My point to Neil, and his wife, was simply that sometimes knowing whats coming is one thing but having it slammed in your face is simply too much to bear. There is no time to process it. I think each family has to deal with this disease in the way that is best for them, whatever that may be.

 

[frankb]

Thanks, Neil, for starting this thread. It really is a subject that many of us have not had the foresight to talk about.