Expert: Mary Gordon - 1/30/2010

Question
Mary, I just stumbled on this site this morning.  You could be a life-saver.  I am in Canada also. My 76 yr old husband has been diagnosed with Alzheimers, Bi-polar, OCD, Anxiety Disorder and depression, also some of the last go together. Saw Alzhiemer Society last week - they think it could be Frontal Lobe Dementia, as he's not deteriorating at the rate expected.   We have not had a good marriage, and over 3 years ago, after yeet another professional (for marriage councelling) was amazed I had stayed, I applied for social housing. This last week, I went to the actual office, to inquire about The List - 5 - 7 year wait; and unexpectedly fell apart.  A kind employee took me aside, and I explained the way I am treated at home - long before the Alzheimers was diagnosed about 3 years ago.  She put me in touch with emergency area for battered women, but said I am emotionally and metally abused, which is true.  I have a geriatric psychiatrist that I asked my doc to be sent to to a while ago to try and cope; - she wants me out of the house.  His doctors told me to have an emergency bag offsite a year ago - I do.
Now he has had eye surgery, and seems to have slipped a bit.  A friend realized a while ago how bad it was, and invited me to go to her basement for 3 - 4 months, then she is selling, and now Monday I see the social housing people who can give me a place in 2 - 3 months. I told my friend I will move to her place March 1st. Not with everything, as it is furnished.  We have also had our ministers here, and they spoke with us (also previously, of course) and made sure he understands I am leaving.   My husband still walks and gets some groceries, does all his own banking, does all his own meds - tho finding it harder.  He has quite a few meds, and I would find it difficult myself. He gets his own lunch and breakfast. Clothing cleanliness is slipping.   I have been told you cannot leave a person with dementia, but I cannot stay, or I might as well be dead.  I mentioned to my doc a while ago, that if I got cancer I would not fight it.  Why fight to get better to go back to a life that is intolerable?  I realize many people are looking after 'loved ones'.  I am not.  We have not been happy at all.  I am willing to visit, and help out.  He had never had friends, ever, we have never had a dinner party in over 50 years of marriage.  So my son and I will likely be the only visitors here.  My son also has an over 80 yr old m-i-l and a wife who is not well.  People say he should help - he has a job, and more than most do now with two women who are not well.  He is most supportive of my suggestion to move, monitor and help, but can't do much more.  He knows his dad is very stubborn.  So I plan on leaving him here, in his own environment for 3 months or so.  The house has to be sold after this time, as we can no longer afford it.  Then I thought he might be able to get an apartment himself.  But we know he won't bother doing any cooking etc.  Its womens work. His geriatric doctor said if I leave (they both know I was planing to go) he will not last more than a couple of months, and will then have to go to a home.  So, how can we determine when things are not safe?  I called CCAC over two years ago, I still have an email saying they are closing the case, as they don't handle seniors with mental issues.  Excuse me?  Alzheimers is a mental issue!  When on meds, most of the time he could be manageable, or they can up the dosage.  My doctor is not happy with this answer from CCAC.  I have my own health issues, and now as my doc says, I am getting depressed, but she can't medicate me for something right in front of me.  Also, I have to do all the driving, and can't on meds without giving that up.  Janaury calendar is fully nearly every day with doctor, specialist for eyes, dentist, back and around in a circle.  Any advice would be most appreicated.  Thank you
Cass

Answer
Cassandra, you really are in the soup - caught between a rock and a hard place. My advice - get the heck out of there. You need to take care of you - particularly at this stage where it is a no win. He is abusive. He is going to get worse and worse. He has no self insight, no proper diagnosis, and he is still together enough to not make his condition overtly obvious to the social agencies who should be assisting and supporting you. Your safety, health and sanity have to be the top priority. Pack your bag and go stay with a friend, a relative, anywhere but in the house with him  - and see a lawyer, in order to protect your interests and assets for your own future. You absolutely need to make sure your will and his are up to date, and that you have a valid power of attorney for him for both financial and personal care decisions. Shortly you will need them to manage his affairs and be able to talk to his doctors. I would also recommend you make sure your son has the same power of attorney for YOU, since your husband should not be put in charge of any decisions for your future, and is unlikely to be competent in any case.  

None of this is your fault, and you have coped as long as you can - and now, clearly, this is entirely too much for you, and it's time to put self preservation at the top of the list. It is entirely healthy to put yourself first. You have done what you can do, and until he bottoms out, there is not much more that can be done.

I would contact the CCAC again if you haven't talked to them in two years - he is not just mentally ill. He has a progressive, incurable dementia - it's a neurological disease - and a social worker should be assigned to monitor his situation. When my mother in law was still living on her own, we had a worker from the geriatric dementia clinic at Sunnybrook Hospital who gave us a lot of assistance. She helped steer us to various services ( a visiting nurse, meals on wheels, a visiting physiotherapist) and also a social worker who came every few months to independently assess my mother in law's ability to live on her own. We also had a housekeeper through the CCAC who came in for a few hours five days a week - the housekeeper kept the place tidy, made sure there was food in the fridge, made sure she was eating - she arrived at the right time to give my mother in law a breakfast and leave her a lunch on a plate in the fridge. The key to keeping the service seemed to be that my mother in law needed help bathing. I don't know how cooperative your husband would be, but a good frank discussion with a worker would be a start.  

As to safety - you will just have to keep an eye on things. As you know, the dangers for him include
1. The financial front  (it's not uncommon that they lose their ability to do math, so they can't tell what bills they have paid, if they are getting the right change, paying a reasonable amount etc).  You might want to have the mail diverted to a box, so you can see the bills and bank statements and make sure everything is being paid, and that he is not squandering money on anything crazy - which sometimes happens, particularly if a con man or dishonest tradesman gets hold of him. This is your money too, so you need to make sure everything is okay on that front.
2. Medications - you might want to monitor these by counting pills or putting them in one of those daily dispensers so you can see if he is taking them appropriately. The end of my mother in law's living alone came from an accidental medication overdose that resulted in a hospital stay - we had her medication all parceled out by day, and we were calling her to remind her when it was time to take her pills - but one day, she got confused and mixed everything up and got sick as a result.
3. Food. Just keep your eye on things - check that he has food in the house that is easy to prepare - milk and cereals, peanut butter and bread. He will lose his ability to tell when food is bad - he won't be able to look at it or smell it and know it's past its prime, so look in the fridge and make sure things that are mossy get tossed out.  Ask the social agency about meals on wheels. As I mentioned, my mother in law had this service, and they delivered really great hot dinners. She was VERY reluctant at first, but it was great - she got a good, nutritious hot meal, and didn't have to try and cook.
4. Appliances, plumbing etc.  When you visit, look for signs that he can't manage common household appliances, tools, plumbing. It's a real problem for people with dementia living on their own. They can forgot pots on the stove and cause a fire. They can leave taps on and have floods. Make sure the water heater is turned down to the point where he can't scald himself, as he will not be very good at telling how hot water should be. Be a detective when you visit, and look for evidence of domestic safety problems. Also watch for hygiene issues, which you note have already started, and do get worse and worse.  
5. Cleansers and poisons. You might want to go through the house and remove most of them. They can be a danger to a person who may not be able to follow instructions - he may misuse them, or worse, mistake them for something consumable. It's kind of like childproofing - his judgement is impaired, so you don't know what he might do, so better to have them out of reach.
6. Driving. I sincerely hope he is not driving. If he is, the doctor has a legal responsibility in Ontario to report him to the Ministry of Transportation, who will send him a letter telling him that unless he can pass a full drivers test by a given date, his license will be pulled.
7. A diagnosis!! If he was previously diagnosed with Alzheimer's and there is reason to think he has a frontal lobe dementia, call the doctor and see if he can't be reassessed - by a specialist in dementias, like a geriatric psychiatrist or neurologist. It does help to have a proper label on what is happening to him, as the prognosis will be clearer. It will help you with the social agencies. If you can, ask to be sent to a dementia clinic where social supports should be available.

Above all, don't feel guilty about doing what you have to do to protect yourself. If he is still together enough to resist help, and can't see his own problems or how his behavior is causing others harm, you can't do more than visit. It's sad, but you deserve better than to try to fix the unfixable. You deserve some peace and happiness.

Hope this helps a bit. I know this has been really hard, but I would very much encourage you not to give up. Things can be better - put yourself first in this equation. If you get sick, no one benefits - you are still here, and there is life ahead for you.

Mary G.