Just found out Mom has Alzheimers

[servant41]

I just found out that my Mom has Alzheimers. She will be 64 next month. I am a 40 year old married man. She is taking Aricept for it. She lives in N. Carolina with her husband, My wife and I live in Alabama with our 17 month old Daughter with another due in March of 2008.
What is Hard about this is that I have an older brother who is 42, who lives in S. Carolina with his 16 year old daughter and his 2nd wife, who is basicaly a recluse. My " estranged " brother. He won't talk to me. He will NEVER make the effort to call and/or write any family member. We basicaly have a one sided relationship. And Although I do love my brother, I hate the way he has neglected our parents and myself in contact. Yet WE need to discuss not what might happen, but rather what WILL happen with our mother.
I just e-mailed him about this. Why should I hold my breath?
I know that this is not right to say, but I would have rather it had been cancer than " The Long Goodbye ".
This is hard.
ANY advice will be greatly appriciated.
God bless, Eric.

[Jo6]

I'm terribly sorry you have a need to be here but glad you looked us up. The reason I found BT many years ago I was looking for a place to learn something about caring for Alzheimer's Disease patient's. My MIL has it and I have been one of her caregivers.

It's been a very long heart breaking journey. About the siblings, if you read the others "story" you will see that most of us have problems in that area. It's a shame, but it is what it is.

Your Mom is so young! I will be 65 in about 3 weeks and this makes me a bit nervous to see this.:eek: Never the less, we all try to help each other in caring for our Loved Ones.

The ones that are the closest should be checking and as you indicated you all should get together and decide on a plan. Does your mom have her affairs in order? I kind of got the impression her husband is your step-father?I'm sorry I left this out but please come back and maybe we all can help each other. take care, Jo

I know these are very personal questions and I don't expect you to answer unless you want to.:) Your brother needs to get real and do what is best for his Mom too. There is so much that will need to be taken care of.

[servant41]

Yes, he is My mothers 5th husband. I only call my Dad, ( her 1st ) Dad or Father. I don't like to say Step-Father. The second word "father" should be reserved for my real dad. I just called all the others my mothers husbands. Out of respect for my dad. She has her insurance taken care of. That I know. But as far as other parts, ????

[Tootsie]

Hi Eric,
Welcome to the Alzheimer's Forum although, like Jo, I am sorry that you have found you need some advice and help. Jo, and I seem to be the most regular contributors here, although others do post occasionally.

First of all, Alzheimer's Disease never helps any family situation, only causes and emphasizes all the disharmony and conflicts that have accumulated over the years. From what you have said, you cannot expect any help from your brother. If he criticizes you, at least you will know that he is paying attention.

That means, that you and your mother's husband will be the major caretakers of your mother. From such a distance away, you need to organize and plan what needs to be taken care of immediately and make sure it is done. That will probably mean a trip to her home and going alone will make it easier than trying to make it a family vacation.

First of all, you need to find out what the legal requirement is in N. Carolina for someone other than the patient, to make legally binding medical decisions. If your mother is still aware enough, you can ask her what her wishes are regarding feeding tubes, oxygen, cardio-pulmonary resusitation, etc. Will she want to be treated with antibiotics if she develops pneumonia?
There is a reason pneumonia is called, "the old people's friend." Death is usually in their sleep, quietly without excessive and prolonged medical intervention, if not being treated.

Keep in mind that as the disease progresses, invasive and painful medical techniques are not only painful, but also frightening, as the A.D. patient cannot comprehend their benefit. Frequently, life sustaining measures only prolong the dying process.

Beware of any document called a "living will" that is only in effect after death. Each state has it's own requirment as to what is acceptable, legally.

There also needs to be a document called a "power of attorney," so that someone else has control of her money in order to pay the bills for her care.
A lawyer in the state of N.Carolina can help you negotiate this.

Since you are the only responsible blood relative, what you say may have more weight than anyone else. However, it needs to be in writing and legally enforceable.

One thing that I found most helpful in caring for my mother was to buy a small, spiral pad or notebook that I kept in my purse. In it, I stapled her Medicare card, her Social Security card, a Railroad retirement identity card. I listed all the numbers of various bank accounts, Certificates of Deposit, their amounts and when they matured, names of doctors, phone numbers, addresses, when she was last seen, medications she was on, their dosages, when she began taking them (helpful if there is a bad reaction,) names and addresses of her friends, etc.

In other words, I had all the data I would need, in one place and it was always in my possession. Being a female who carries a purse was really helpful in this regard!

Since there is no real treatment for this condition, planning for the next stage of the disease is crucial. If your mother's husband is healthy and able to care for her, be sure to be supportive of his efforts. It is imperative that he have some kind of respite, to get a haircut, play cards, visit his friends, engage in a well loved hobby, or simply go to the park for a walk.

Some communities have day care centers for Alzheimer's patients, or activities that spouses and patients can attend. Look for county listings in her phone book for Senior Centers, Council on Aging, or simply the county social services offices. They can tell you what is available locally. Cheerio.

[servant41]

Thanks for all the advice. Yes, my mothers husband is competent enough to tend to her needs. He is just a little older than her. I wil lneed to call him this weekend to talk about her future.

[rumpled]

Good luck to you...
Another thing we did was to hire a "case manager" (our doctor had names) who in our case, helps hire aides and arranged for an estate attorney to talk to the family. This was very helpful as my FIL had made every estate mistake there was and it was only the third party telling him that made him realize that his control made it so they could not get benefits. Having a third party too helps defuse certain situations when things get hard and plus since you are far away, he/she may be able to manage things for you.
An estate attorney, one who does not demand a high retainer, is also a must. Even though my inlaws do not have money... they needed to be told what needed to be done (separation of assets, etc) so that my MIL will be eligible for medicaid sooner. My FIL refuses to get a living will for religious reasons and we cannot make him understand what it is. My MIL does not have one either. He refuses to pre-pay their funerals and they have no life insurance. I think he thinks if he does that, they will immediately keel over? We are not happy as we are going to have to pay and not know what they want, either... I hope you get more responses than we did.
Even if your mother's husband is competent, please arrange to get help for him as a caregiver needs help and time away to do shopping etc. or his health will begin to suffer as well.

[Tootsie]

Eric, I agree with rumpled about the value of a "case manager." This service was in it's infancy when I dealt with my mother's disease but frequently a professional can make someone see the reality of the situation where family members cannot. However, these types of services do not come cheap and I always hesitate to recommend any course of action that involves money until I know whether or not funds are available.

In California, decisions about health care are made according to what is known as a "durable power of attorney." It basically states what the patient wants done in different medical scenarios. A "do not resuscitate" order is only part of it. It only means that heroic measures like cardio pulmonary resuscitation will not be used if the patient's heart stops. There is no end of other situations that require attention, BEFORE that happens! A DPoA, can state that the patient wants all possible care and treatment to prolong their life, no matter what the cost. Most elderly people do not want this type of care, as it means long periods of time in an intensive care facility, hooked up to all kinds of machines and a tube in every orifice God gave them, and perhaps a few man made ones! Also, most families would do almost anything to avoid the situation that Terry Shiavo was in. It was the case in Florida where the husband wanted to disconnect her feeding tube and the parents resisted, going to court, lots of press attention, and even the politicians got involved. I hope you can avoid family conflict over this decision by having your mother make her own decision before the disease progresses to the point when she can no longer do so. Cheerio.

[rumpled]

Tootsie is right... we had a case manager though for $250 an hour that reamed us... and was awful and then we hired on for $500 an hour who is absulutely wonderful and so effecient that we actually pay her less. How counter-intuitive is that! In our case, there is no money (in laws are broke) but my FIL is so distrustful of everyone that we had to bring in a case manager as he does not see reality and she can quickly investigate services and knows things that we do not. My FIL is very difficult and does not understand things. For instance, my FIL still refuses to get a living will for himself and his wife as he thinks it violates his religious beliefs (Catholic).

[Tootsie]

Have you asked his parish priest to discuss this with him? I do not know if there is any problem with Roman Catholic beliefs, but I would seriously doubt it. Cheerio.

[rumpled]

We cannot get him to go, ironically... and we have brought it up that all his friends (who are Catholic too) have them and we do... but he may be a new brand of his own... He is essentially housebound with his wife, trying to take care of her. He refuses to hire the aide for enough hours so that he has enough freedom to take care of himself. The aide only comes for 5 hours, 6 days a week. And guess which day my MIL is worst? Yes, the day after the aide's day off...
I tell my husband that he does well by his father and not by his mother and he had the gall to tell me that his mom is not complaining! I said how can someone with her level of dementia know! He agreed that the best decisions are not being made and he has POA but he will not change it... She has a level 3 bedsore right now and the aide nor her husband noticed it. I fail to see how she is getting adequate care. I mourn for her. They are not living a nice life at all but in my husband's opinion, it is fine as it is the one they choose. I think they only choose it because they do not know any better. I refrain from visiting as it hurts and I am disabled myself and I cannot see what I cannot help. But I would not leave them like this if they were mine.

[Jo6]

I think we have been thru every faze there is. I cleaned house, Dr. appoitments ,yes, one end to the other. At least I felt safe to sleep with one eye open.

Well, actually I didn't do this long without help. Hubby tried to help, but he didn't know what or how to do these things. He is an angel, but I don't think I am good at delagating etc.

It will ruin your health. Most of us already have our own problems. It is not an easy life to live. I'm sorry for every one of you.

It is heartbreaking and it is indeed a long lonely life to try to life.

Sorry y'all, don't mean to talk so down today. It happens, but I should not let it spill over onto someone else.

Those that are interested in having a "room of our own" please just sign where I posted. It could be just what the DR. wants from us, take care of myself.

If you don't want this room for any reason don't be shy about saying so. reason. Y'all take care and keep smiling with head held high. People we go bonkers as to why YOU are so Happy.

Jo:)

[Tootsie]

rumpled, has there been medical attention given to the stage 3 bedsore, or is FIL and aide trying to treat it on their own? I think that you would be justified in reporting this situation to the local authorities as "elder abuse." Most counties have some type of social services known as Child Protective Services, Adult Protective Services, etc. Usually, you do not have to give your name when you report such things but I'm sure that if you described the situation, your own physical limitations, etc. they would be able to look into the type of care your MIL is receiving.

Bedsores present the opportunity for some very nasty and life threatening infections and perhaps that is what needs to happen before FIL would be able to accept the situation. So sad. Cheerio.

[rumpled]

I made them take her to the doc the earliest appintment... doc said it was a stage 1! Assigned wound care to come in. Aide is a little miffed that she was not brought in to do it but we (hubby and I) are still amazed that she did not notice the crater when she bathed my MIL. Now, it could be that my FIL is still controlling things and trying to dress her before the aide gets there and we cannot figure out why it was not noticed. Wound care would said the bedsore was NOT a stage 1. His dad would not let the nurse call my hubby and will not tell them about me. Again, the control thing. FIL does not realize how serious it is. We do like the aide so we are not sure what is going on... FIL does not like to communicate about what is going on but to anyone visiting, he will give a facade that all is well. The place will appear clean. They will be dressed. Only if someone looks deeper will they know that my MIL sits for the entire day, does not eat properly, that a schedule cannot really be kept, that no activities are done for her. We constantly remind him that since she is blind, having the TV sound off and nothing on keeps her further isolated so to keep something on for her to listen to. I had arranged for her to get lessons when she was in better shape to deal with her blindness but they both said NO. She is 100% dependent on him or someone to eat, dress, go to the bathroom - everything. And he thinks he can do it alone.
I am sorry I hijacked the other person's thread... I am just afraid if I report my FIL, my husband will find out and it will be further strain on our marriage.

[Tootsie]

rumpled, I sure wouldn't want you to risk any further strain to your own marriage in an attempt to get better, or more comprehensive care for your MIL. However, you might ask your husband if he is legally liable for anything that might happen to his Mom? I have no idea if social services would ask him about, what he knew, and when he knew it.

I have found this technique to be quite helpful especially when I am asking about something that only men know about....car problems, and other mechanical thing around the house.

Recently, a neighbor asked if we would pay for half the cost of removing HER tree. We have expressed concern that it might fall on our house. My first question, was, what is our legal liability if we do so? Cheerio.

[rumpled]

Thank you. Sorry for the hijack.