We have a 2006 Ford Taurus and I have had to put my DH in the back for a while now. He kept opening the front door when the car was moving. It is extremely difficult to get him into the back seat because even with the front seat moved way forward it is still cramped to get his feet in the back door. (and putting on the seatbelt is a nightmare). I wish I knew if there were any way to make the front passenger door "childproof" because, though difficult, it was still much easier to get him in and out of the front seat.I'd love to buy a new, more disability friendly car, but that is out of the question.
gmaewok - I wonder if talking with people who equip the vans/cars for disabled would know a way. I would think if there is a way to disable the door lock from inside but still work with a key is possible. Are you locks electric or have the button? If old enough to have the button, you can unscrew the button that way you lock the door from the outside and he can't unlock from the inside (unless pulling the handle automatically unlocks it). There is always the option of taking the door handle off too. Also the American with Disabilities organization may have suggestions.
gmaewok, I don't have any of these problems with my DH yet, but I've read about spouses grabbing the steering wheel when they were in the front seat. Is that likely to be a problem for you if he is in the front? I'd be careful about it.
Thank you, Charlotte. It looks like there are several options I could try. But, as Janet mentioned, there would be a chance that he would grab the steering wheel. I guess I'd best just keep him in the back seat. Soon, it will be a moot point as he will be placed as soon as there is "space available"
Jane, Thank you so much for your input and all the input from all others as well...
Jane, About the "mobility van"...what type did you buy and does your husb actually "walk" up the ramp into the van, or is he in a wheel-chair and you are pushing him up? I'm confused about how he actually manages getting into the mobility van. I am still running all this through my head. From what I have seen on-line, the turny seat comes out of the vehicle and down to their level and they just "sit" on it and then it goes back up & swings back into the vehicle, not requiring them to lift legs, etc. Not sure what you meant by the turny seat wouldn't work because they might not remember what to do after a while. I guess I need help understanding this too because I am thinking of the turny seat as a good "fix" for a long time, until he can no longer "go" out in the car...Even with a wheel-chair bound person, thinking I could somehow get him to the seat & then "electronically" move him up & in...Thanks for your input and so sorry this has taken me a while to sign back on. My life seems very complicated these days and I try not to do too many things @ the same time, but, well, y'all probably know what I'm talking about! Thanks again!!
I have a friend with a 20 year old child with MD and in a wheelchair. They have a lift in the side of their van that comes out and down. They load her and the wheelchair on it, secure it and automatically lifts her and her chair into the van. Very simple and nice for their situation but I think they are costly. I think a Church donated theirs to them. Be nice if you could find a used one.
Last year I called a "conversion van" place and they make vehicle changes. Be a good idea to call one in your area. The first one I called gave me the phone number of a business in another city who did the changes and they would be happy to advise you as to costs etc.
My sister has a conversion van. It has the ramp that goes out (manually or electronically), she pushed him up and secured the wheelchair with safety belts. Her van is equipped for a handicap driver - the driver's seat turns around so they can slide onto it. I would imagine you could have it so the passenger seat does to. For her just leaving him in the wheel chair was best.
Please help me think this through. Once my husband reaches the stage where he is wheelchair bound, cannot understand how to get in and out of the chair to get into a car, will I really be wanting to take him out on a regular basis? I realize that he may need to go out for doctors/dental visits, but aren't there services that could provide transportation for that (for a fee), like those used by nursing homes? I know each of our spouses' disease process is somewhat different. Perhaps Jane's situation is unusual, and the van is a great asset, but would that be the solution for most people?
Marilyn, as of this week, (I hope this is temporary) I cannot get my husband into our car. It's a 4 door sedan and because he cannot walk with his walker very well, doesn't understand "lift your feet", etc., I don't know what I'll do when and if I MUST get him into the car. He is in Hospice, so a Nurse and Doctor come to the house...but other things, such as haircuts, etc., will come up soon. For reasons I cannot justify, I do not want a big ole van instead of my small luxury car.
marilyninMD Don't try to plan until you get there, your husband may not even reach the stage where he is wheelchair bound. Mine has not, he just won't walk when I need for him to, won't get into a vehicle at all because he does not understand how etc. Yes there are services that provide transportation but with my husband and the incontinence it is not an option for us, these services run at their time not at yours, they drop several people off to the appointments and then pick them all back up at the same time. Some people have to wait even after a Doctor office closes to be picked up by the vans.
In a Nursing Home the Doctors come to the NH most of the time.
My situation is not unusual, it is just that this is the choice I made for us. It means the difference in dependence and independence for me. We have been on this journey starting our 10th year and it could be a long walk yet.
I would think that the length of time you felt you might need it would be a big decision maker for you.
Most areas now hame IN HOME PHYSICIANS. HOUSE CALL PHYSICIANS, or something similar to that. Google those names and put in the name of your city or the nearest city and see if they are available in your area. Before Hospice, we had this for two or more years. They are usually Internists...who call monthly (or as needed), plus Cardiologists who can do EKG's, and Echocardiograms in your own home..lab techs that can come to the house for blood work when needed. It was amazing. I used House Call Doctors-Texas, (enter that on Keyword Line) and they work in the Greater Houston, Austin and San Antonio area and points between. I know, for example the Austin office services San Marcos, about 35 miles away. Medicare paid all of the costs. It was such a convenience. This is a big business with doctors now..and the groups are popping up everywhere. Houston has a number of them. They will visit a nursing home when your spouse is moved there, so continuity is no problem.
Nancy B Don't be surprised if you loose Hospice along the way. We had Hospice for over a year and when my husband did not show physical decline the left us. I don't mean physical decline like unable to walk without assistance etc. I mean actual physical decline such as infections, etc.
Also learn to cut his hair yourself, you might surprise yourself. I had never in my life tried to cut his hair but I had to learn as he no longer knew how to get into the barbers chair. All this happened 3 years before we had Hospice and we still lost them.
Jane-that is such a long time. My husband was diagnosed at about the same time as yours. He has been on Hospice for about 2 1/2 years with a steady decline. He is now solidly stage 7 and hanging in for the long haul.
natsmom, I just now read your question to me. I am sorry I did not respond sooner. I sometimes go weeks without logging on and then I sometimes just scan topics.
I have the power wheel chair, it has a caregiver control on the back so that I operate it. My husband no longer understood how to get into the car, I take him up the ramp with the power chair.
I looked into the turny seat, I kept thinking to myself how wonderful it would be to have a seat that came down to his level and then lifted him up into the car, so I started checking around and low and behold found the turny seat. I went to the mobility place and saw how they work.
Natsmom, you have to remember, and this has been hard for me also, that what they can do today the will not be able to do at a later time, he now would not be able to lift his feet into the van if I had gotten the turny. The seat comes out, the person sits down, the seat lifts them back into the car but not without the caregiver or the person having to lift their feet as it turns, it does not slide back and then up, you have to lift the feet in. The feet are dead weight and would be too hard for me to get into position. When you see the turny in the video it looks like the feet would be lifted in also but not without help from the person or caregiver.
The Alzheimer patient will get to the place that they do not even know how to turn around much less lift their feet into place.
The turny seats run from $6,000 to $8,000, at least the ones I looked at cost that amount.
The type van I bought is the Braun Enter van conversion. It squats and kneels, meaning that it lowers itself so that you can take the person into the van in a wheel chair.
Jane, my husband has multi-infarct dementia and Alzheimer's Disease. He is 82 years old. He is pale as a ghost, and in the past month suffered two TIA's. At this stage of the game, I don't think I am going to worry about losing Hospice at the end of the first six month period.
If he doesn't qualify for Hospice at the end of six months, then that will mean that he doesn't NEED hospice at the end of six months. I'm OK with that. The doctor is very concerned about the frequency of his TIA's now..and we're taking it a day at a time. What happens in May 2010, happens in May 2010.
Jane, Thank you SO MUCH for all the info. That's exactly what I needed to hear to try & understand it all. You are a huge help and a wealth of info for me.
I don't plan to take my hubby out once he cannot really go out, but for now, and until he is no longer interested in "going", I guess I'm going to keep on trying. I too want the feeling of "independence" vs. "dependence". One day it may be different, but until we cannot go, I will keep trying to figure out how we can.
Thanks, y'all for ALL the input! It has helped so much!!
Jane, one more thing...I looked online @ the Braun Entervan Conversion...once you get your hubby into the van via motorized wheelchair, what happens then? Do you "secure" the wheelchair into the van in the back? Front? Can you let me know what happens once you get him in. We had a friend who's husb had ALS & they had the kind of "lift" someone else mentioned above where it would come out & down & then his wheelchair would be lifted back up & in, and once "inside", it would sorta "snap" into a big piece in the middle of the van & I am remembering that my friend would then need to seatbelt him into the van, in addition to that snapping into place...is this what happens in your case as well with the Braun Entervan? Thanks again!
Natsmom, My husbands brother has the type van you mentioned. It is called a Wheel Chair Lift, I had thought that would be my option, we were going to use his van for Doctor appointments. Well the first time we used it we had a very important Doctor appointment to be evaluated for his power wheel chair, my husband did not understand to bend his head down as the lift lifted the chair inside, and he would not bend it down to come out of the van, we thought we had an emergency situation, finally we got him out. His brother said never again to try that method.
I knew then I had to get the Braun Entervan with the drop out ramp. This squats down and kneels the van and then there is no problem with head clearance. My van has the EZ-lock system that the previous owner had installed, it is a $2,000 system that allows the person to sit in front in the passenger side. The passenger seat would be removed. I do not use that, I left the passenger seat in place. I use the tie down straps in the middle of the van to secure my husband then use the seat belt to fasten him.
Natsmom, a lot of people think this is an expensive route to take, the caregiver has to live also, and it gives me peace of mind, I now can take him to his Doctor appoints, drive thru outtings, banking, out to get take home food and yes even out anywhere I need to. I count this as part of the expense of keeping him home, it allows me not to pay for a sitter for every little thing I have to do. So in my case it was money well spent. I bought a used one and it has been wonderful. It has allowed me to be more independent.
The Braun Entervan sounds like a great option for select people and Jane is one of them. My dh can still do ok with our Lesabre, but that may change tomorrow. Buying used would be a great option. Some cars are easier than others. Our Lesabre has a good bit of leg room with the seat pushed all the way back and my husband wears size 12 1/2 shoes. Recently I was looking at other cars and he could NOT enter the Prius. No way could he get his feet in the car. You might find a good used Lesabre at a decent price and at least let him try to get in. Definetly let the disabled try before you buy - whatever. At present I am staying with what I have. Like Jane said, if it saves you the cost of a sitter, it wouldn't take long to justify owning one and resale should be good for someone in a similar situation.
Jane,, Thanks for the info...the more I know before I "go" to seek after what I "think" I need is most helpful. You & I seem to be on the same page of "independence" WITH our spouses. Today we had a dr. appt in Dallas & getting back into the car @ the valet parking was difficult, BUT, we did it...once my DH was in the car & door shut, I looked @ the guy standing behind me (he witnessed the butt on the seat, me lifting up his foot to the running board, helping him slide in)...I told the guy "THIS is the face of Alzheimer's"...I think he was a tad shocked! But, it's okay...that's how I choose to educate the world...Thanks again, Jane! :)
Nancy B, Sorry I mentioned the fact that you might loose Hospice. Sorry I mentioned the Miller Trust, please do not think I am trying to tell you what you need to do, that is not my intention. Yes, you are correct, what happens happens.
I had not followed all your posts, did not know your husbands age, just noticed that he was able to do far more than my husband is at this time and did not want you caught of guard. Just disregard any post I made.
bluedaze, It is so good that Hospice has been there for you. You say your husband was diagnosed at the same time mine was with a steady decline, do you mean physical such as infections etc? My husband is stage 7b, cannot talk, cannot walk without being led to where he needs to be, cannot feed himself, is incontinent and knows not one person. His eyes search for me when I am talking to him and i will be sitting right in front of him. It is the saddest thing I have ever witnessed in all my life. he has had a steady decline in the mental aspect of things but not the things Hospice said they needed in order to stay with us, such as infections, pneumonia etc. They told me even if he became bedridden they could not come back unless he had a physical decline that would take his life. go figure. I would think decline is decline but not so with them.
bluedaze, I have not talked much about where we are with this disease as it hurts so much, but my husband sleeps 80% of the time unless I am constantly talking to him and trying to keep him awake. The Doctor told me to stop.
I really think Hospice is according to which Hospice you have. I know they left Sandi with a bedridden husband and I call that decline in the worse way. I have never been able to figure it out. I don't think the fact that they leave is any indication whatsoever that the NEED is not still there.
Jane our husbands are at the same sad point. No infections or other life threatening events. The nurse is able to document a steady decline in life function. I have not been able to wake him at all most of the time. He will probably aspirate his pureed diet and develop pneumonia which hospice will wish to treat with Augmentin. When that decision comes I don't know what I will do. It seems wrong that the different hospices have such different philosophies. If hospice orders Augment-which is very expensive-they cover the cost.
Yes, hospice did discharge my husband because he didn't decline fast enough...turns out they were right. He lived for over three years after they pulled out. But, when he did contract pneumonia and I knew he was actively dying, they came back in and did their thing. I didn't need much from them...I had been doing hospice care for him myself for a long time....but it was easier to have them on board when death occurs since I just called them and didn't have to worry about "who do I call......"?
However, I feel that hospice takes a real good look at the situation and the people involved and decide what kind and amount of help you need. With us I didn't want much from them...just the help with the death issue. They did provide the liquid morphine that I used and did come and give him a bed bath three times a week and the RN visited twice a week for the two weeks he was in their care. I told the chaplain not to come since my husband wouldn't know he was there and I didn't need any information or counseling from the social worker. They could see that I was on top of everything so I didn't avail myself of all that they might have offered.
Jane, I know exactly what you are dealing with and I send you my virtual shoulder to lean on.......
We have more than one Hospice here to choose from....and they get mostly reimbursed from Medicare. I was told that as long as my husband continued to decline, he would remain on hospice, and that they reviewed every 6 months. His mini-strokes continue his declines, and his nurse indicated that he'll remain on hospice until he dies. I hope she is right.
Jane-I aaree with something you said a long time ago. Hospice really shouldn't be long term as with my husband. I surely do appreciate all that they are doing for him. As a former home health nurse I understand how they play the game. Just as we need them do they need us as clients. It is the start up that is expensive to the agency. Established clients are gravy. I am not about to rock the boat. My only concern at this point is for my husband.
I thought I would bring this topic back up because we finally got a seat for our car...Actually, we had to get a "new" vehicle (Toyota Highlander) because the Ford Explorer we owned could not be retrofitted due to air-bag issues with the addition of a Bruno seat. BUT, thankfully, Toyota has it all figured out. The seat (passenger side) turns out, comes out, and down...then once my hubby sits down, it lifts him up & tips backwards & then goes into the vehicle again, hauling him in...I have to press his forehead back & encourage him to "relax" and "lean back", but eventually we get him in...also have to encourage his feet to be lifted. so far, it is working BEAUTIFULLY!! And, we added the price of the seat to the cost of the vehicle, so we are paying it off monthly, as we are the vehicle. Thankful once again to be able to go without too much trouble getting into and/or out of the vehicle. I think my husband is alot happier now also.
............as an aside, just to prove that we never never know. Disregard Stage 4-5-6-, Moderate, moderately severe, severe... and this is why I say that. My husband was not bed bound, could still talk a little, could feed himself, "almost always" made it to the toilet in time, could walk about (fairly well) wth his walker..... He was NOT frozen in his chair, without cognition of anyone or anything around him. He watched a little TV, looked at pictures in magazines and loved his litle white dog.
On November 8th,.. Jane and I were in a conversation on this particular blog about Foster, and we discussed whether or not he'd be 'reinstated' for Hospice at the end of six months..because (as Jane said) quote: ....just noticed that he was just noticed that he was able to do far more than my husband is at this time and did not want you caught of guard. "..................
Foster died 7 days later at 6:22 AM.
and,yes, Jane, I guess I was caught off guard... anyway. I, too, never dreamed he had such a short time left to live. Nancy B*
Nancy, obviously he did die of "complications of Alzheimer's" - but do you think there was a stroke or heart attack involved too that precipitated the sudden decline?
I had much the same situation as Nancy. In our case we had no indication of stroke or heart attack. I don't think Hospice or Doctor had an explanation of the rapid decline. Paul had low BP and no heart issues in his past. Fran had similar rapid decline also. My personal observation was the fact that he had 4 really bad problems and his body just gave up or maybe he did. He had Alz. Parkenson, Vascular Dementia and Spinal Stenosis.
Our situation was much the same as Nancy and Lois. Claude was under hospice care with Alz, Parkinson's (I still think it possibly was LBD) and Congestive Heart Failure. His cardiologist wanted to put in a pacemaker in 9/2008, which we said no to. He went into a light coma on Saturday and passed away about 3AM the following Thursday morning.
He was three weeks away from turning 87. Even tho his death certificate states "alzheimer type dementia", I really think that he, as well as his heart, just gave up. The last few weeks, he would all of a sudden start to cry and ask what was wrong with him, something he had never done before.
One doctor said that his symptoms indicated a possible brain stem infarct which often causes this sudden halt. He was obviously blind and couldn't move himself at all during the last few days...which is what the BSI would have been like. He said he had seen several cases of this happening to Alz. patients. It's brought on when the disease or plaque reaches the part of the brain that controls the central nervous system i- a spot about the size of a pea (according to the doctor) and the brain stem stroke will follow. I don't know what happened. I do know that SOMETHING big happened..very quickly, with NO warning. I'll never get over how fast he went down.