Facing a Diagnosis this Week

Welcome. So sorry you need to be here. The first thing I did was make an appointment with a lawyer. This is very important. Thankfully the doctor told mom she should not drive or live alone. If you are questioning his driving at all I would ask the doctor(give him/her a note, bringing it up in front of your husband probably won’t go well). It’s nice to be able to blame the doctor. You will get blamed for enough other stuff. Mom had been kind of living on her own and one of her biggest symptoms was poor judgment. There was so much to to. She hadn’t replaced her cpap machine when it broke a few years ago and it needed to be replaced, she had lost lots of weight and had basically no clothes that fit her, she hadn’t been to the dentist in ages and needed two teeth pulled, hadn’t seen an eye doctor and she hadn’t been to a hair dresser in a long time. She was always very independent and would not allow help. After her diagnosis it was obvious I needed to take control. Because we were told she should not live alone, so she moved in with my brother, but her house was a disaster! I also did a lot of reading to learn all I could about dementia, Medicaid and how care facilities work. As depressing and scary as it all is I felt better at least having some idea of what to expect and having some idea how the system works. I tried really hard to figure out what to do next. There were so many things to consider. My brother works full time, was she safe alone?, would she qualify for Medicaid?, should we hire caregivers or bring her to Al?, how long would her money last? She constantly wanted to be taken to her house, which caused her lots of stress. Learning different ways to interact and approach difficult situations with your lo can make a huge difference. Learning to never argue is a big one. The first year I was so incredibly busy and stressed! I have attached a few resources that may be helpful. This forum has been such a great resource. There are so many little things that come up that no one can help with unless they have been there.

You mentioned your anxiety over where to find help for your DH. We are blest in that our children came up with the idea that we would all work as a team in finding solutions to problems as they arose, including spending time with their dad (or father in law) as needed to give me break. I know that not everyone is so fortunate. But, in terms of practicle thngs…we hired a part time house cleaner, I got a personal safety device for myself (help, i've fallen button), I need to change the lock on the front door so DH will not open the door to strangers (back yard is fenced and I will get a key lock for the gate so that he cannot escape), get cameras and alarms for all doors . Eventually, I will need to get someone to stay with DH so that I can get out if the kids are unavailable. Then, there is home health which your doctor can refer for you as your DH needs more physical help. Some places have adult day out centers and ultimately, there is either hospice care or memory care. After Christmas, I will be touring all the nearby Assisted Living and Memory care facilities and get his name on the waiting list…just in case that is needed.

I am sorry you are here. You will get excellent support and advice here. There is a link for what to do when a loved one is diagnosed. Many of us have added to this list. First, speak to an elder law attorney and get legal affairs in order. Second, you will need to take over all finances. Speak to your financial advisor and/or accountant about what you need to do. Get account numbers, log ins, and passwords to all accounts. Get log in and password for phone and computer. Third, if your loved one is still driving, call your car insurance company. Most will not cover an accident with an Alzheimer’s diagnosis. You will get sued for every thing you own. There are companies that offer driving tests that are three hours long to determine if you are capable of driving. Alzheimer’s impacts your driving skills. Next, while your loved one can still make decisions with you, discuss what your loved one wants or doesn’t want for medical intervention, funeral, etc. Tour assisted living and memory care facilities. Get your loved one on a waitlist. It can take years to get into a facility without being on a waitlist. Call in home care companies. Get information and costs. Call your local council on aging and ask what services are available. Read, read, read. The 36 Hour Day is a great start.

Safety for yourself and your loved one is number 1. They have no idea that they are not driving safely due to changes in the brain especially with spacial orientation. Find a therapist who handles dementia patients and caregivers. They understand what you are going through and are a great resource for assistance. I was advised to get a life alert type of device for myself and my husband because as the disease progresses, your loved one cannot understand to call 911. You become an adult caring for an adult who is reverting back to a child who cannot care for itself or you.

No, there was no push back on these items. These were suggested by the Mayo Clinic HABIT Program when we were in the program. The Tile devices helped with him constantly misplacing items and trying to locate them.

I got my dh an airtag with a heart on it to have on his keyring. I didn't tell him it was a tracker, but I did say there was a heart on it because I love him.