Caregiver for Husband with dementia

drakeladyAugust 29, 2007

I have just now joined this forum. I seem to be able to find posting by children and in laws. My concern is related to my husband. He is 79 and I am 71. Just very recently he has been diagnosed with dementia of Alzheimer's type by the doctors at the VA hospital. I had noticed changes in him but never dreamed that the situation was this drastic.

For many years I was employed as a 911 dispatcher. I worked 12 hour shifts, some months days and the other months nights. I really believe now, looking back that his condition may have been going on longer than what I care to admit. His short-term memory has suffered. He can recall events that took place years ago with great clarity.

Now he misplaces/loses items quite often. Cell 'phone, keys, etc. So far, I have always been able to locate these items. He puts things back in their proper place but in the wrong way, if you know what I mean. The spoons, knives and forks will be in the correct drawer but not always in the correct slots. Also, he insists on 'doing' the dishes for me. Most of the time, well almost all of the time, I must wash them over.

I am happy that he wants to help, but...Now during some days of the week, I am not home, but at the real estate office where I work. He will prepare his own lunch, but will leave food stuffs out on the counter and when I come home, there they are and I have to throw them out. Now I wonder how many things has he left out and put away just prior to my homecoming...

How do others 'handle' this type of situation, when the person is your spouse? any advice? I am aware that this situation will probably only deteriorate as time passes.

Oh, last December he had an accident and totaled our minivan. Luckily no one was seriously injured. He has failed two state required driver's tests and the state wants him to surrender his license. However, he is at this time, insisting that he can and will continue to drive. We live in a very rural area and it is a 20 mile round trip to stores and such. At this time I do drive him to the VA hospital.

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You are on the verge of having to make some decisions that he will not like. In fact, he may have to get a little worse before you can.

Needless to say, he MUST stop driving. Perhaps if you put it to him that since the State wants him to stop driving, if he were to injure or kill someone, the family of the injured would probably sue for immense amounts of money. Pretend that you are really worried that you would lose everything. That might get through to him rather than just saying that he doesn't drive well enough any more.
Pretend that's "it's just temporary until we can get it straightened out with the State. and you can pass the test"

Get used to telling little white lies. Often, it's a useful tool in handling the dementia patient. (Now, we'll wait until someone signs on and says you should NEVER lie.) They have never had any experience in handling a stubborn Alzheimer patient. Sometimes you lie because otherwise the truth can upset them.

No one, especially someone that isn't thinking well, wants to give up that big symbol of independence, Driving.
First, take care of yourself and remember that you will have to take on the role of the strong one in the family. It's going to be hard.

Check back with us when ever you need to just vent. Sometimes, someone will have exactly the information you need.

    Bookmark   August 30, 2007 at 7:22AM
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Is VA the only medical care he has? Does he have Medicare? If so, do you have a family doctor he could go to?
I decided years ago with what I saw with patients and the care he received, my husband would not receive care at VA even being 100% disabled.
Sometimes, getting a second opinion from a civilian doctor that is not limited like doctors at VA, can be helpful to make the best decisionas as to care and treatment.
I think the suggestion of saying to wait till it gets straightened out with the state is an excellent idea. That of you standing to lose lots if he drives and has an accident is definitely true. If you know of someone who has had this happen to them, then you could tell him exactly about the lawsuit and make it a joint decision as to what to do.
If you belong to a church, some have a group that visits where that would help you during the day and give him something to look forward to. Some areas have Senior citizen groups that provide transportation and pick up the people to take them to a center for recreation or just visit.
As he apparently does not realize the problem, having a caretaker come into your home would probably be too upsetting for him.
I do hope you are able to get the answers and help you need. With all the emotions we go through dealing with this type of situation, I wish you the best.

    Bookmark   August 31, 2007 at 10:51PM
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Little white lies aka "fibletts". The Alzheimer's Association actually told me during a workshop "you have our permission to use them". Joking but serious too.

So sorry Drakelady that you have to join the ranks but I'm part of this team also. No fun! How are you making out-its been awhile since your post and I dont check in often, got my hands full!!

    Bookmark   November 12, 2007 at 2:58PM
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Here in Dallas channel 4 news did a report on the local VA hospitals and it seems the doctors are very lacking in taking care of the people. If your able to find a doctor outside of the VA I would do so ASAP.
I know about dementia, my grand mother had it. My dad is showing early signs BUT he also has a problem with potassium. Two years ago you would have thought that he was ready to go into a nursing home due to his state of mind. When had to go to the hospital for a different problem they ran blood work and found him to be depleted of potassium and gave him a large dose to get it back up. After he'd had the potassium I noticed a bid change in his thinking and clear headed. I went with him to his doctor and told the doctor about this and he put him on potassium.

Reason for potassium depletion is due to taking high blood pressure medicine.

Do not try just giving him over the counter potassium because to much can do damage and you do not know how much he needs if this is the case but even if it isn't from low potassium Please find a better doctor if you can.

My DH is retired from the Navy and he told me to never take him to a VA hospital.

    Bookmark   November 23, 2007 at 4:41AM
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This is all so timely for what we're going through. I'm an only child, dad is 84 and a retired pharmacist, so he knows medication. He had a number of small accidents but when he had 2 fender benders in a week, I called a halt to his driving. The problem was that my mother (who was doing most of the driving anyway) fell and broke her right elbow. 9 weeks in a cast etc. I hired a caretaker to help and drive 5 days a week and they had the cleaning lady on the 6th day. On the Sundays they stayed home or used their taxi coupons.
We made dad promise not to drive and we put the keys away to his car so that he wouldn't make a rash decision. We got him to go to the neurologist for a full workup. He took his time and then said, nothing that should keep you from driving! I almost fell over! The caretaker drove around the neighborhood and came back and said to my mother"NO WAY!"
At that point I used similar reasoning as previously stated and brought up the case of the 86 y.o. who drove into the Santa Monica Farmer's market and killed 10 people. He was confused, not homicidal. I told Dad that all of that man's savings went to legal bills and he suffered everyday for the rest of his life living with the memory of what he had done.

We put a for sale sign on his car (he wasn't insurable on Mom's anyway) and it sold the next day. Phew, we dodged that one, but I'll probably have to deal with mom in the near future. She's safe for now but having some visual disturbances. Sigh...

Oh Yes, the VA??? He's a disabled vet and INSISTS on going there to get his meds for free or at a very discounted rate. Mom hates it. They misdiagnosed his echocardiagram about 10 years ago and he had an mitrovalve hanging by a thread. I got him to see our friend the cardiologist who immediately hospitalized him and scheduled for a valve replacement. Sometimes free medical care is just too costly! He now has private docs and uses the VA ones for coumadin blood work and the check-up to get his meds.

    Bookmark   January 26, 2008 at 2:29AM
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This is good info for me too - see my post on Placement for both parents. Thanks for posting. Although it's been on my mind for a year or so, I'm now forced to do something immediately since my Dad has major dimentia and my step-mom JUST had a stroke. Logisticallly it's horrible since I am, and my step-brother are on opposite sides of the country, and they are in Michigan.

I'll check back for more info. My best to you in your situation - this is so difficult, especially in your case, having to deal with a spouse. Sending Big Hugs!!


    Bookmark   January 26, 2008 at 11:52PM
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My husband had Alzheimer's and we were fortunate that he was ok to stay alone in the mornings, but never after 3 PM, he had sundowners. I took care of him for 4 years but started having health problems so I put him in a care home. I was very lucky regarding driving. He had two wrecks and the last one serious, but no one was injured. I told him if he continued to drive he could hurt someone and we could lose our life's savings. After a few days he told me he would give up his license. Then I faced the question of his almost new pick up which he really hated to part with. He wanted to keep it, so we did until I got the next bill for insurance, he decided to sell it instead of paying for insurance. when your husband decides to stop driving, be sure he gets converts his license to an ID card. Lots of medical facilities require a photo ID> Good luck to you.

By the way, a friend advised me not to tell anyone that my husband had Alzheimer's because it would cause trouble later and she was right. When he had to go to the hospital, I told them and they put him in a senior's behavioral lock up. There they treated his Alzheimer's and didn't believe me when I said he had an infection before I got him out of there his blood count was down to 6 and he almost died.

    Bookmark   February 6, 2008 at 3:52PM
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Normally, older veterans have serious health problems where the medicine can be expensive. I was told if my husband came to an appointment every so many months, he could get his medicines, eye care and hearing tests and aides.
We go to these appointments and he gets these benefits. They have a list of his doctors and if any problems, they confer with them. If surgery, special needs, or hospitalization is required, he goes into a civilian hospital and is cared for by one of his regular doctors. He sees a physian's assistant at VA. If new medicines are prescribed by a regular doctor, we get them filled at a regular pharmacy. However when he goes to the VA appointment, they update his prescriptions and we then get all of them thru VA. WE can only get his pain medicine thru a regular pharmacy. To get it through VA, he would have to go to one of VA's doctors and have all kinds of tests. We'd rather pay for the medicine.
If you have VA benefits, you need to check with them as there may be a need you have that they will cover. I didn't know they would pay for a ramp so we built it ourselves when my husband had his leg amputated. We find out about new things but have to ask or go on line and check the benefits.
If on Medicare, check to see about a person approved to come to the home to assist. I believe it is only a few hours a day and for a certain length of time. I don't know about medicaid.
My husband is in the first stage of dimentia. I saw on a TV program and read in the news about a medicine being used for people with memory problems. I asked the neurologist about it. In going over my husband's tests, he approved the medicine. Aricept is not a cure all but has helped my husband. Not everyone can take the medicine. Your doctor would have to evaluate the person first.
I don't tell the hospital he has dimentia unless a problem arises. With all the medicine he's on, They usually consider that is causing his confusion. Let them think that as long as some resident doesn't think he knows everything and tries to change medicines. We had that happen and I told the cardiologist I didn't want that idiot in my husband's room nor access to his records. Never saw him again. He had prescribed my husband to be taken off his seizure medicine as the resident didn't like that medicine. First of all some medicines you have to be weened off not just stop.
Sorry this was so long but perhaps some of the information will help some of you. You have to learn to assert yourself and sometimes be a real witch to care for your loved one and make certain others do what is right.

    Bookmark   February 10, 2008 at 2:35PM
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The pharmacist told me all of the meds for Alzheimer's are experimental, none have been proved to help. My husband had multiple ulcers and his blood count was down to 6 before the doctors would believe it was caused by the Exelon. Even in the care home they insisted on him trying it again.....he had nose bleeds two days in a row, they never listen to the family.

    Bookmark   February 21, 2008 at 11:06AM
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