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 Home health coming in... I hope 
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Joined: Tue Apr 29, 2014 4:27 pm
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Post Home health coming in... I hope
I was wondering if anyone else might have dealt with this issue and if so how it turned out ? I spoke with my husband's doctor's nurse today and ask if home health could start coming in to do the blood work and urinalysis. She said she is pretty sure that he can set this up for us. Larry is barely able to push his walker now and barely moves his feet. He is really getting weaker again quickly. Today I noticed as he was eating, saliva was stringing down into his plate as he tried to eat, I was so sad for him I had to fight tears. I have never seen this happen before. He can barely stand up to urinate now, much less be gotten ready and taken to an appointment. How do some of you deal with doctors appointments when they are almost totally bedfast ?


Tue May 27, 2014 9:15 pm
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Hi Leslie. My mother's doctor gave us the phone number for physicians who come to the home. Hopefully, you live in a big enough city to have such doctors. We've got "Mobile Docs" and "American Home Physicians" here. I don't know if they're chain companies.

But to get started right now, your husband's current doctor can order blood work and an urinalysis. Then he/she can fax the order to a home health agency of your choice. Then the agency will send a RN out to do the lab work. Medicare covers this. It also covers other home health services, if your income is sufficiently low.

Before, we had a doctor come to the house, we were working with a home health agency. They would send a nurse weekly to take blood and urine. My mother was also given monthly B-12 and iron injections (the latter was for anemia, secondary to lymphoma). When my mother became bedbound, we called the doctor agency my mother's dr. recommended and never went to a dr.s office again. Although the total time from starting this to "finishing" it was only about 3-4 months.

They also sent a CNA once a week to give my mother a shower. It wasn't really necessary, but since I knew the CNA, personally, I elected to give her more work. It also gave me 45 minutes to myself!

If you don't know of a good home health agency, maybe your husband's doctor or your friends might be able to recommend one.

Getting a geriatric internist to the house was a godsend! Let us know how it works out. AnneAAAAA (We have 2 "Annes" now, also AnneN!)

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AnneA -- Forum Moderator; also daughter, caregiver, and patient advocate for Jean, who died of LBD in January, 2013, at age 91.


Tue May 27, 2014 11:20 pm
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AnneA wrote:
Hi Leslie. My mother's doctor gave us the phone number for physicians who come to the home. Hopefully, you live in a big enough city to have such doctors. We've got "Mobile Docs" and "American Home Physicians" here. I don't know if they're chain companies.

But to get started right now, your husband's current doctor can order blood work and an urinalysis. Then he/she can fax the order to a home health agency of your choice. Then the agency will send a RN out to do the lab work. Medicare covers this. It also covers other home health services, if your income is sufficiently low.

Before, we had a doctor come to the house, we were working with a home health agency. They would send a nurse weekly to take blood and urine. My mother was also given monthly B-12 and iron injections (the latter was for anemia, secondary to lymphoma). When my mother became bedbound, we called the doctor agency my mother's dr. recommended and never went to a dr.s office again. Although the total time from starting this to "finishing" it was only about 3-4 months.

They also sent a CNA once a week to give my mother a shower. It wasn't really necessary, but since I knew the CNA, personally, I elected to give her more work. It also gave me 45 minutes to myself!

If you don't know of a good home health agency, maybe your husband's doctor or your friends might be able to recommend one.

Getting a geriatric internist to the house was a godsend! Let us know how it works out. AnneAAAAA (We have 2 "Annes" now, also AnneN!)


Hi AnneA, I just googled home physicians and there aren't any near us. Thank you for responding. His doctor is suppose to be setting up a nurse from care tenders today, I am praying that they will act fast. We were up most all night using the suction machine, he was strangling terribly, thank God for that machine. I have had him on oxygen since yesterday and it is still staying down around 90-94. I am worried about aspiration pneumonia, but he had the pneumonia shot 2 months ago and he has no temperature. Should I have an ambulance take us to the doctor for xrays ?


Wed May 28, 2014 12:17 pm
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Leslie, the pneumonia shot will not protect him much against aspiration pneumonia, as this is largely a mechanical problem of food, fluid, or some other substance getting into the lungs. Most doctors do not see patients who arrive by ambulance. If the patient is so ill to require an ambulance, the doctor will usually recommend going directly to the hospital. That's what I would recommend. Save yourself a trip, and go directly to ER by ambulance. Let us know how he's doing.

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AnneA -- Forum Moderator; also daughter, caregiver, and patient advocate for Jean, who died of LBD in January, 2013, at age 91.


Last edited by AnneA on Wed May 28, 2014 2:13 pm, edited 1 time in total.



Wed May 28, 2014 12:30 pm
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Leslie, I don't know how many ER trips you've made. With my mom, We made several. Be sure to bring all his meds and his doctor's info, insurance card, any eyeglasses, dentures, and snacks for yourself! Also, since your husband is having trouble walking and standing to urinate, a catheter will probably Be recommended . Home health nurse can change it.

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AnneA -- Forum Moderator; also daughter, caregiver, and patient advocate for Jean, who died of LBD in January, 2013, at age 91.


Wed May 28, 2014 12:36 pm
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AnneA wrote:
Leslie, I don't know how many ER trips you've made. With my mom, We made several. Be sure to bring all his meds and his doctor's info, insurance card, any eyeglasses, dentures, and snacks for yourself! Also, since your husband is having trouble walking and standing to urinate, a catheter will probably Be recommended . Home health nurse can change it.


AnnieA, I keep a permanent hospital satchel with my cellphone charger, nook & charger and everything I will need. I pay our bills on the nook and keep in touch with family and friends on the cellphone. Our doctor will allow the ambulance to bring him in for xrays if he needs them, thank God. His oxygen has leveled out some in the past 2 hours, but he is almost to weak to make it to his lift chair to eat. I want to move the chair in our bedroom close to the bed and he will not have it. He says he needs to keep walking or he will be bedfast. he will not listen to the fact that he isn't strong enough to keep making that trip into the living room and back. I am so exhausted and so tired of him making foolish decisions ! Our doctor said the weakness is normal and that the hospital cannot change that.


Wed May 28, 2014 4:18 pm
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Leslie, you are much more organized than I ever was! How fortunate that your doctor will allow the ambulance in for X-Rays; that was never our experience here. But we're surrounded by hospitals and our doctor didn't have an X Ray machine in the office. At least with an ambulance, you have help getting your husband in and in and out if a wheelchair. I'm so sorry for all that you're going through. Of course, you're exhausted! You'll have to make some of these decisions for him, for his own safety. He is at high risk for a fall now. What I'd tell my mother is that the doctor told me to do such - and - such. Whatever gives you the authority to do what needs to be done. Maybe move the chair when he's sleeping! No, the hospital can't change the weakness. All they can do is manage medical crises as they come up, such as aspiration pneumonia and dehydration. Hang in there. Keep us posted!

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AnneA -- Forum Moderator; also daughter, caregiver, and patient advocate for Jean, who died of LBD in January, 2013, at age 91.


Wed May 28, 2014 4:54 pm
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Do you have a service for people in wheel chairs? Where I live there is an agency called Special Services Transportation Agency, which sends a van to your house, has a wheelchair lift, takes people to appointments and gets them back home for a small fee, $5 I think. That is much cheaper than hundreds of dollars for transport. (my son just had to be transported by ambulance, didn't require life saving machines or anything and it was $700 to go about 4 miles. We were not allowed to take him by car to save $ because he had to have his neck stabilized.)

If there are things you need to do to make your life easier as a CG, you just need to do what you need to do. If your husband is angry at first after you move the chair, he might be able to process something like "I need to do this because I need to stay healthy and strong. What will you do if I get injured from moving you and can't help you anymore?" Even at his worst, my dad was able to understand things like that and perhaps your husband will be able to process that too. It is very difficult to have to make some of these kinds of decisions, but unfortunately that's just how it is when you are able to think clearly and make decisions and the other person isn't. It's so hard, I know, but you need to take care of YOU too. Be strong, Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed May 28, 2014 5:54 pm
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AnneA wrote:
Leslie, you are much more organized than I ever was! How fortunate that your doctor will allow the ambulance in for X-Rays; that was never our experience here. But we're surrounded by hospitals and our doctor didn't have an X Ray machine in the office. At least with an ambulance, you have help getting your husband in and in and out if a wheelchair. I'm so sorry for all that you're going through. Of course, you're exhausted! You'll have to make some of these decisions for him, for his own safety. He is at high risk for a fall now. What I'd tell my mother is that the doctor told me to do such - and - such. Whatever gives you the authority to do what needs to be done. Maybe move the chair when he's sleeping! No, the hospital can't change the weakness. All they can do is manage medical crises as they come up, such as aspiration pneumonia and dehydration. Hang in there. Keep us posted!


AnnieA, I am also sorry for what you are going through, ( we need a hugs character on here, I would send you and everyone a hug, lol ). For 38 years I have always lived the " he's the man of the house" and it is so hard to over ride him, but I see that coming on fast, as you said, for his safety. I test his sugar level because we both have low blood sugar, so thank God, I can tell when he is dehydrated and I googled the aspiration pneumonia, so I am starting to believe he doesn't have that. I think the Lewy body is just progressing, sadly to say. I didn't hear back form our doctor today so hopefully tomorrow, if we don't end up in the hospital before then.


Wed May 28, 2014 6:00 pm
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We do need a "hug character" don't we? Maybe Matt can make us one! It would be used quite a lot I think. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed May 28, 2014 6:04 pm
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LTCVT wrote:
Do you have a service for people in wheel chairs? Where I live there is an agency called Special Services Transportation Agency, which sends a van to your house, has a wheelchair lift, takes people to appointments and gets them back home for a small fee, $5 I think. That is much cheaper than hundreds of dollars for transport. (my son just had to be transported by ambulance, didn't require life saving machines or anything and it was $700 to go about 4 miles. We were not allowed to take him by car to save $ because he had to have his neck stabilized.)

If there are things you need to do to make your life easier as a CG, you just need to do what you need to do. If your husband is angry at first after you move the chair, he might be able to process something like "I need to do this because I need to stay healthy and strong. What will you do if I get injured from moving you and can't help you anymore?" Even at his worst, my dad was able to understand things like that and perhaps your husband will be able to process that too. It is very difficult to have to make some of these kinds of decisions, but unfortunately that's just how it is when you are able to think clearly and make decisions and the other person isn't. It's so hard, I know, but you need to take care of YOU too. Be strong, Lynn


Lynn, I typed out an entire post to you and it disappeared.


Wed May 28, 2014 6:11 pm
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Lynn, I am sorry about your son, I am praying for him. We have a son who can take off work, with pay, he is salary, and take us to the doctor but it is so hard on larry I try not to unless it is an emergency. I guess as you and AnnieA are saying I will have to be strong and make the right decision for him. I have tried to explain to him what will happen if I get down but he thinks he knows what he can or can't do, sad to say.


Wed May 28, 2014 6:14 pm
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LTCVT wrote:
We do need a "hug character" don't we? Maybe Matt can make us one! It would be used quite a lot I think. Lynn


Yes, Thank you !


Wed May 28, 2014 6:52 pm
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Thanks Leslie, my son is doing well considering the accident he had. As long as he keeps his neck brace on properly he should heal in about another 8 weeks. He's young, strong, healthy, and eats right, etc. so things should be ok by the end of the summer. Thank you for your concern. Thank goodness he has a desk job and great medical benefits too!

When I was at the point where I knew my dad was making decisions that would either be bad for him or bad for me, I had to step in and take over. It was not easy going from an adult child to having to act like the parent of my parent. It was very painful as it is for spousal CGs too. The role reversal or in your case, becoming a parent to a spouse is not something we are ever prepared to do. So there is nothing wrong with your feeling stressed, guilty, and all of those other things. We have all been there (unless our LO is in a very early stage of this disease). I tried to make my dad feel included in small decisions so he didn't feel like I was totally taking over his life (which I pretty much was) but I had to try to let him feel like he still had a say in things.

For example, if I had the situation you are describing, I might ask my dad "Would you like the chair in corner X, or over here?" instead of something like "I am considering doing this for your own good. I hope it's ok with you." You have made the decisions that IT NEEDS TO BE DONE, so there is no question about that. And then let him have input on the "small stuff". When I felt my dad needed to get out and get some fresh air when he was living at the ALF I realized he NEVER wanted to go outside, so instead of asking IF he wanted to go out, I'd say "Dad, it's really nice out today. Would you like to go out the front door or the side door?" That sort of thing. Then he felt like he had some say in his activities. It takes some creativity and getting used to not only the new role you have to play, but how to phrase just about everything you are doing.

I had to take my dad's license away, and that was just about the hardest conversation I've ever had with anyone in my life. I felt like a horrible ogre, but for his safety as well as everyone else's it had to be done. Some decisions just are not negotiable and there is no way I could think of to let him have input about it. I did get through to him when I said "If you cannot walk well because your legs are not working properly, how can you possibly get your foot onto the brake quickly if a kid runs out in front of you? Do you want to be in a lawsuit because you hit someone?" Those kinds of questions he could still process at the time we had that discussion. Painful as it was, he agreed he probably shouldn't be driving (although he didn't verbalize it, of course!) Good luck, hug icon, hug icon! Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed May 28, 2014 8:23 pm
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Lynn, my dad is 79 years old and has Alzheimer's disease and he still drives, No one can stop him. I stay scared that he will wreck himself and my mom. My dad can't remember what you said 10 minutes ago but he is still very mobile. Larry hasn't driven since last fall, he couldn't raise his foot high enough to step on the gas or break so I started driving and have ever since. my mom has never had her license. I will certainly use all of yours and AnnieA's advice. I am So very thankful to find this forum, I felt very alone until I did. Hugs !


Wed May 28, 2014 8:39 pm
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