Am I up to the job?

[DreamsEnd]

Hi all,

My wonderful husband was just diagnosed in January and confirmed in 2nd diagnosis at a San Diego ALS clinic in February. He/we are doing well right now but I'm concerned about my ability to care for him when he progresses significantly. He actually has more energy and strength than I do. I have severe COPD and asthma and although currently active I worry how I will have the physical strength and energy to care for him in the future which is my deepest desire. We're both in our early 70's so I'm no spring chicken.

I guess we'll just cross that bridge when we come to it and gain information along the way.

Sherry

 

[LoveMyBoy]

Sherry I'm so sorry. I wish I had something really helpful to say. Gathering information is really important - at least means that you have ideas on how to deal with whatever new challenge comes up. Take any and all offers of help (do what I say don't do what I do on this one). I'm a planner but every time I think I have it all figured out how I will handle the next stage it goes differently and it's all out the window anyway!

Of course you will worry and this disease is a beast, but it's also unpredictable so I think crossing bridges when you get to them and gathering information along the way is a great plan, particularly this early on.

Deb

 

[Santa joe]

Sherry my mother had COPD and I know first hand the physical toll that alone can be. I applaud you for wanting to take care of your husband. As you know our pals progress differently but I believe you are going to need help at some time or another. My advise is to have a plan and then a backup plan. I'm speaking from experience. Accept help from anyone willing to offer. CNAs are reasonable but even that adds up. The physical toll is hard - the emotional toll is even worse.

Debbie

 

[zoohouse]

Was your husband ever in the military? If so there is an amazing amount of support, and you can get around the clock care for him to stay at home.
if he was contact your PVA and they will take care of everything.

Paulette

 

[MaxEidswick]

>I guess we'll just cross that bridge when we come to it and gain information along the way

great attitude. this will serve you both well. I double down on all that has been said, but also you need to do thee same for yourself.

Right away, find friends/clergy or whomever you can talk with (unload stuff). While your husband is able, get out, breathe, get a coffee/tea, and think your favorite memories -- for me it was up on our mountain watching my birds

>I have severe COPD and asthma and although currently active I worry how I will have the physical strength and energy to care for him in the future which is my deepest desire

I am betting you will do just fine, but you have to deal with you first -- just like an airplane ... "put on your mask first before helping others".

Max

 

[Barbie]

having your own health issues will make everything tougher. but a good attitude and realistic view of the situation will help you cope. Def. need to look into help sooner rather than later, after you have worn yourself out. you really have to heed the warnings of taking care of yourself so you can take care of him.

I would start now in getting help around the house if you don't already have any. yard service and cleaning service. do you have adult children who can help out down the road? start looking and talking to agencies who provide home health care. You don't have to jump into full time care, you can ease into it. when he begins to fail, you can start interviewing CNAs and start with one part-time. I hope your husband was in the military because that is the only way you will get assistance with home health care.

 

[FSHolbrook]

My wife is 73 and she is acting as my caregiver. I know that it seems like a very daunting task and it might be but, the above suggestions could prove to be very helpful in the long run. I would suggest finding a local ALS support group if you have not done that yet. You will find that there is a tremendous amount of help there in the way of resources--very much like you find on this forum.

Rick

 

[DreamsEnd]

Wow, your replies have been wonderful and supportive. I needed to hear what you all had to say. Things seem to be changing fast. Three weeks ago when my husband had his baseline visit at the ALS multidisciplinary clinic Clinic at UCSD, he was in "terrific" shape with only the weakness in the fingers of his left hand, which were the symptoms that brought us to a neurologist in the first place.

Now only three weeks later he is experiencing weakness in his right hand as well and I'm noticing some stumbling. I am convinced that we were both in denial to a degree as he was doing so well, we expected he would continue to do so for quite some time. The specialist at UCSD said don't read too much on the Internet, just go live your life. Great advice but if it wasn't for this site I wouldn't know a lot! If he's rapidly progressing now does it sometimes slow down for a while or is rapid just rapid?

Yes, my husband is retired military and was only in a hospital once in his life. He came down with a rash that was determined to be measles while he was in basic and he was put in isolation for one night. He's been exceptionally healthy all his life. He did complete the VA application with his PVA at the time of the clinic appointment. The PVA told him at the time that the fast tracked ruling would take two weeks and that he would keep in touch. He hasn't but we've called him and lately we haven't been able to reach him. Voice mail! So I called a regional ALS/VA in a clinic in a different city today/yesterday to see if we could get an update. The District Manager.called back and said the process takes 3-4 months and to call them when we move back to this state and get his records transferred. So we're looking at two to 4 months before we know. Is it always approved?

But now I'm scared. We're full-time RVers who sold our home and contents about a year ago to live this life which we love. We have a big truck and a huge 5th wheel. I just completed RV Driving School last week so I can handle it myself when he no longer can or to relieve him if he tires. But at the rate I see progression I worry that I want a single story house where we can live and eventually I can care for him in a place we'll be safe and comfortable. It turns out the home we just sold which closed just last August is back on the market for sale by owner because of a death in the family of the family that purchased it. We loved it then and it is perfect for our future needs and I want to buy it. My husbands visceral reaction was "it would be signing his death warrant". I sure can understand those feelings but I don't want to move into it now, I could care less if the house sat empty for two or more years while we continued to travel.

We could swing it now but it would be no problem once the VA determination is made. Husband doesn't want to deplete our savings to put a down which the VA housing allocation would offset. The house is likely to sell before his determination for disability is finalized. We do plan to continue our trip to the east coast and go as long as we can. But what if......
We have friends, support, good doctors, etc. there. I don't want to be someplace where we don't know the area or people when we have to stop RVing.

He's resisting and I'm pushing. Normally, I'm a kind of fly by the seat of my pants, flexible, I'll figure it all out when the time comes kind of gal and I always have but this disease is unpredictable! I'm not normally the planner but am pragmatic and I sure see the need for it here.

I have no idea how long it would take once his disability determination is made to then apply for and receive the housing grant? If we depleted our savings for a significant down, would the VA allow the grant to replace those liquid funds? Questions and my sweet husband is really not attempting to get answers. "I'll call tomorrow."

The ironic thing is the owner of the house's maiden name is the same as mine now & her husband was misdiagnosed with ALS 10 years ago so they are very knowledgeable. Tell me that buying our home back was not meant to be!

Sorry for this very long middle of the night post and for your sharing.

Sherry

 

[dalvin]

Dreams end,
I can only address the va issue. Don't know why they said 3 to 4 months. Mine came through in about 2 weeks after it was applied for. The housing modification grant is automatic with ALS so you shouldn't have to apply for that.

 

[Nuts]

Hi Sherry. It took two weeks to get my husbands determination. He was already partially disabled and was diagnosed at a VA hospital, so they had ready access to his records. I don't know if that made a difference. Four months does not sound right. I feel your fear and understand your husband's resistance...I wish I could offer comfort. Perhaps he could view buying the the house as a way to provide for you and to give you some small piece of mind. The wonderful people on this site have helped me understand how important it is to stay ahead of this disease. My husband is very intelligent and emotionally strong, but asking for things before he needs them is difficult, maybe because it requires acknowledging how quickly things can change. Me, I want to get things into place quickly in the hopes that I can then relax a bit and enjoy the time we have...without worrying that I won't be able to get him into the house one day. Tell him you need to know the house is there.

 

[MaxEidswick]

Hi Sherry --

>Yes, my husband is retired military and was only in a hospital once in his life... He did complete the VA application with his PVA at the time of the clinic appointment. The PVA told him at the time that the fast tracked ruling would take two weeks and that he would keep in touch... Is it always approved?

Our experience with the VA is very positive. Once diagnosed with ALS, you will be fast tracked in your disability claim and also future appointments etc.

your PVA rep is key to this and if you're having problems let us know and we can forward on your information to our PVA rep so he can help.

>But now I'm scared. We're full-time RVers who sold our home and contents about a year ago to live this life which we love. We have a big truck and a huge 5th wheel ....

Well first of all that they say I'm jealous , I have always lusted for the RV lifestyle, but I fear my wife can't imagine RV lifestyle with my four dogs .

ALS doesn't mean the end of your life or lives. It just changes the timing of some things.

Hang in there and be aware that your feelings and emotions will go up and down over the next few months (at least ours have).

Best regards, Max

 

[Barbie]

Hey Dreamy,
I can not say anything about VA--don't know. but we use to have an RV (long before ALS came to visit). did not live in it full time was just for vacations. I am impressed you would be willing to drive it--I was scared to death! I think you do need to be concerned about him being in a power wheel chair and getting in and out of the RV. the modifications can be done but they will not be cheap. Also, as time goes by and he needs more equipment and help getting in bed and out of bed and the bathroom ... I think if you could swing it I would buy back the old house--it might be 6 months or a year or 2 years, but you will need a permanent place for him. understandably he is in denial but changes are coming and no one can tell you how soon. a comfortable and familiar place with friends and family near by will be so helpful to you both as time goes by.

 

[zoohouse]

Hi Sherry; Welcome to this forum, it is a great source of information and advice. The ALS clinics are great, but there is nothing like asking someone who is dealing with this disease directly. Firstly do you have a fixed address that you receive your mail? We have had excellent help with our PVA, both in Texas, and now in Washington. It is complicated in our case as my husband who is the vet, lives now in Canada with me, so we had to work through White River Junction, VT. The hardest part was getting a primary care doctor at the VA. He applied in July, and wasn't going to get his first appointment until Nov. But being a nurse I have a little idea of how to deal with these things. I brought him to the Dallas VA walk in clinic, and presented ourselves, with the information that we had. (MRIs, EMG, diagnosis letter from ALS clinic) Explained that he was needing equipment at that time, and that I was taking him back to Canada to care for him. We had already been in contact with our PVA rep, and all paper work was filled out, so that may be your only stumbling block. We left with a wheelchair, walker, cane, right AFO and BiPap machine. (He had already had the prescription for the BiPap from a sleep study he had had 2 weeks earlier) We had to go back the day before we left for an inservice for his particular BiPap machine, but basically the physician we saw went through fire to get everything that we needed before we left, and forwarded all his files onto Washington.
Like Max said if you continue to have difficulties reaching your PVA let us know and we will contact our guy, who goes between Seattle and Washington DC.

Paulette

 

[SMP51]

when we needed to over haul the bathroom to wheelcahir accesable he said "we dont need all that yet" and I told him we may not and things may never progress with you but niether of us are going to get any younger so we're getting it done.

when transfering into the car from the chair became a nightmare he said "we dont need a wheelchair van yet, I can still transfer...."
I said dripping wet from the rain, we may not need one but I WANT one.

when he didnt think we needed a hoyer lift yet I told him I guess he would decide he needed on when I needed to call the fire dept to get him off the floor, and I sure hoped he had his pants on......

dont worry you will evenually have the right words or situation to make the changes needed

 

[DreamsEnd]

Again, I thank you all for your wonderful replies and support. I suspect the slower VA determination in our case is because our "Domocile" (official address for full-time RVers) is in SD, we applied thru the VA PVA in San Diego and I plan to return to AZ. I'm gathering the VA Disability approval goes thru regional offices and maybe some are slower than others?

The SoCal PVA is not as informed on ALS or the disability application as we were and we did come to the meeting with all papers completed and documentation required. As I had said, he promised to keep us informed but hadn't returned my husbands calls. When I called a PVA in AZ asking for clarification and giving MY phone number because we were driving different vehicles at the time, the California "district manager" called him back and he's the one that said it can take up to 4 months - so that's where I get the regional impression. My husband, not knowing all the questions I had didn't get the info I wanted. I learned from that that the PVA in AZ is more responsive and when we get the designation we'll transfer his records to AZ.

Because his records are still in CA my husband wanted me to only call the PVA there so I did and he actually answered the phone. He said the home grant can't be used for a home purchase and that very few homes qualify for the VA grant. I had read differently.

So we found a VA Adaptive Housing agency in DC and I sent an email last Friday with my questions. To my surprise a delightful gentleman called me the same day with the answers to all my questions. He was wonderful. He suggested we buy the home with a VA loan and when my husband gets his rating he will automatically qualify for the home grant, that some of the grant funds can be used for adaptation as required and the balance can be used to pay down the mortgage.

So now we're working on the phone to see if our AZ Credit Union does VA loans. My husband now understands that we/I need to have a place to go when he can not manage the steps here in our RV. So I think we're past those particular roadblocks.

In the meantime, I drove the rig from our last campground to this one with no problem, we left our second car at my sons in Tucson so if my husband becomes unable to drive we only have to worry about getting one vehicle back which I can do.

While he is progressing and getting a little weaker we're still enjoying this lifestyle with and for you all. It's gorgeous in NM at the moment! We hit a local winery after set up last night and discovered a Green Hatch chili wine. How fun is that?

Again, I thank you for your offers of support and great information.

Sherry