Desperate conditions and decisions

Onceadoc

My wife has FTD. She’s been ill dating back about 8 years. I had to stop working outside our home 18 mos ago because it became unsafe to leave her alone. We lived in a dangerous city. It was just the two of us and a dog at home in an apartment with no reliable immediately available support. I worried constantly that something would happen TO ME that would leave her alone and completely vulnerable. I felt desperate and was nearing the limits of my ability to cope and manage.“We” decided to move across country to be near to family that WANT to help and be there for us especially “in case of emergency.” The move has been financially and emotionally difficult, but I do feel we’re in a safer place all around and I’m not waking up as much with the nightly worry demons. I do have to continue to work from home to pay the new bills.  Unfortunately it’s really provoked her condition and she is much more frequently angry, agitated, and sometimes physical toward me so a new source of stress, guilt, and worry. Before leaving I had reached out to our doctor and even established care with a geriatric doctor who specialized dementia care to help us fill the known and expected gaps in our life situation. Other than a new Rx no other support was included in her (our) care plan. I called a dementia hot line and spoke with a person at length who later emailed me a list of potential resources I could have pulled down myself on a google search - not very helpful. So back to square one on all of that now. Need a new doctor here (looking) and need a solid and comprehensive life skills/care/support system for what’s ahead. I need help with navigating the ways and means of bringing someone into our home (now a house) to help. She’s going to be VERY resistant to that. SO I would really appreciate anyone’s  thoughts and recommendations who have “been here done this” on how/where to start all over in our new location. Is there a best way to get the help we need? I need a real ally - not just another shoulder to cry on.

BillieCDD

I understand what you are going through. I am retired, though, with a pension and social security, so I spend all my time as caregiver. I have dropped out of my previous leisure activities and do not have family nearby. I have done research and have learned a lot.. here are some ideas, maybe something will help. This is hell for you and me too.

 PLEASE FURNISH YOUR APPROXIMATE LOCATION.. STATE.. BECAUSE THIS MAKES A DIFFERENCE. I LIVE IN FLORIDA.

1. One of the most helpful things for me was to read the book Dementia Home Care (Perkins). It helped me a lot.

2. Make a list of triggers.. that set off "bad" behavior. Try to avoid these at all costs. Moving was surely one of them. I have hesitated to move out of our home for this reason, and only recently decided to move myself to assisted living and hope my husband will join me, which I think he will, and then sell our house. Another trigger for my DH is doctors. I was lucky to find one in a small office where there is not a lot of commotion. There is very little that can be done medically , so do not frustrate yourself by thinking a doctor will help. You must make changes in your lives that will make it happier and healthier for you both.

3. Get help... are you a vet... call nursing homes in your area and see if there is someone there who wants part time work.. use neighborhood or family to agree to spell you for an exact time so you can have some time alone.... some religious organizations have lists of people looking for work... in general agencies that send help are not the best option...there is a shortage of home care workers and therefore the standard drop.

4. see a good  elder lawyer to make sure all your legal docs are in order. In some states you can transfer all assets into your name and put your wife on Medicaid, which will give you more choices.It is a radical idea, but some people divorce their spouses so they can get them more help. I HAVE HAD OTHER EXPERIENCES WITH CARE GIVING, AND LEARNED THAT THE BEST OPTION IF IT CAN BE ACHIEVED IS TO FIND YOUR LOVED ONE A GOOD OUTSIDE RESIDENCE AND GO THERE EVERY DAY TO MONITOR WHAT IS GOING ON. To do this you may have to change your marital status.

5. If you believe in prayer, do it.

6. The "bible" of dementia is the John Hopkings book the 36 hour day.. it is good.. but I have found the Perkins book a life saver.

Some of these ideas will not suit you.. but maybe some will. Good luck.

Joe C.

Once, My DW was very resistant to my initial attempts to having help come in when I presented as the person was there to help her. When I needed to have some surgery I told her that a person was coming to help me recover from my surgery which was a fib. DW was fine with the new caregiver since she was “coming to help me” & the caregiver was in on the fib & played along. In a short time DW bonded with the caregiver & she was with us for 4+ years. I suggest coming up with fib that “you need help” and see if she is more receptive since it is not for her.

Finding help depends on where you live & what resources are available. In my state, MA, most towns/cities have a Council of Aging office where you can call to get information about the what resources are available in you area. Local Caregiver Support groups are also a good resource for what is available in your local area. You can search for support groups in your area on the main Alz. Assoc. page.

Onceadoc

I have the 36 hour day book, but I found it written from the point of view of a person caring for a parent so didn’t resonate with me. I will get the Perkins book. We are in Southern California. I am a vet, but hadn’t considered VA resources. I did reach out to an agency before we moved, but seemed they were most interested in me signing a contract with them for their services so I lost trust in that option quickly. We’re in our mid-60s so potentially many years ahead. I’ve considered an elder care lawyer, but  I’ve hesitated on that because the main trigger for her is any encroachment on her autonomy. She’s completely unaware of her limitations and quickly angers. It’s made keeping house and preparing meals more and more difficult because that was her domain in that past. At the extremes of her behavior - she can be very cruel and hateful - especially toward me - I’ve considered radical options like divorce, but the sheepdog in me couldn’t live with that. It’s near impossible for me to carve out any time away from home to meet with anyone. How would meeting with a lawyer work? I’m hoping to be able to keep her in her home for as long as possible. Yes I’ve found little real help in the medical care - ironic since it’s where I did my life’s work. Thank you for your reply.

Onceadoc

Yes more and more fibbing going on here every day and doctors are another trigger. Hates them all so far and harder to get her to go, though I know medication can help with the behavior issues and sleep. Her asleep time is my only real break.

Iris L.

Onceadoc wrote:

 She’s completely unaware of her limitations and quickly angers. 

This is anosognosia.  If you confront her with reality, she will resist and become upset, as you have seen.  This is distinct from denial, but a characteristic of dementia.  Learn work-arounds from the members.

Iris L.

HollyBerry

a couple thoughts -- the lawyer we saw was happy to meet by zoom. You can use headphones with most computers so your wife can't eavesdrop.  Is the move recent enough that you can use "paperwork about the move" as an excuse?

W are lucky to be in a city with an Alzheimers Research Center associated with the university. There is a geriatrics clinic at the University hospital that has all the services anybody could want, connected to the ARC  or not. Case management is available if we want it.

 The county Aging and disability resource center was really helpful with my mom. They would also probably meet by zoom.

Onceadoc

We were close to a major university with a large ARC but without a reliable emergency response support system for us it was of little practical day to day value. She had one encounter with a neurologist about 2 years ago, but stormed out of the office during the examination and then proceeded to physically assault me in the car on the way home for bringing her there. Although the exam was truncated the neurologist obtained enough info to make a preliminary diagnosis of primary progressive aphasia. But she said she would never go back and after that visit I saw little value in it myself. At the end of the day I know it’s her own fear that drives all of this behavior and it’s so sad. I will look into a virtual consultation option with an elder care lawyer and do some more fibbing if needs be. I’ve become very fearful of her more extreme behavior including unrelenting verbal outbursts, getting physical with me, or her storming out of the house to get away from me. I haven’t found any consistently reliable de-escalation techniques such as reassurance, redirection, or just active listening and acknowledgement. Any thoughts or recommendations from the group?

Cherjer

Have you ever tried a care manager? I have had one for 3-4 years and has been very helpful. I too live in S CA and there are many resources here.

storycrafter

Such a difficult situation and my heart goes out to you.

Seven years ago I was at my wits end and about to leave my husband (he was eventually diagnosed with FTD, behavioral). The only thing that saved us was... I made an emergency appointment with our primary care family doctor under the guise of helping me. I took a concise written list of the changes in my husband and the main issues. Gave a copy to the receptionist and asked to be sure the doctor saw it before seeing us. Just in case, took extra copies in with me and casually handed one to the dr when we got into the actual appointment.

The doctor responded well and provided immediate support - medication until we could get in to see the specialists. The medication helped almost immediately and returned some quality of life. It has made all the difference. After initial consults with the specialists for fine tuning, we no longer see them at all unless there's some change in symptoms that requires adjustment of meds.

Everyone has a different situation and I can only speak from my experience with dementia in my father (Alz) and in my husband (FTD). Medical help improved quality of life for my father until he passed, and the same for my husband. It has stabilized my spouse so that we have a manageable life.

Your local Area Agency on Aging, and your local Alzheimer Assoc. meetings can be the best places for local resources and support. Keep reaching out and asking for help until you find the support you need. It's worth the effort. Wishing you all the best.

Onceadoc

I tried the same technique. I made an Appt with our prior primary care doctor, but beforehand sent a detailed message in “my chart” about what was going on and the help I thought we needed. Unfortunately - although the doctor and staff had said they had read my message when we were in the office - the only thing they keyed on was her accusations that I was angry and scary and I was provided with a referral to psych for anger management. I acknowledge I’ve been frustrated plenty and angry at times (I admit I’m not Mother Theresa), that wasn’t the issue we needed help with. Later he said he could only respond to what was said in the office -I’m glad you found an ally in your primary care doctor. All about having the right doctor and support staff to help with this condition and I’m actively looking now that we’ve relocated.

Iris L.

You will find that most doctors and professionals who claim they work with older adults are unfamiliar with dealing with PWDs.  That's why you have to educate yourself, so you will know how to question and ascertain the doctor's experience and expertise.  BTW, I was a pediatrician in my working life.

Iris

storycrafter

That must have been so disappointing when you didn't get the help needed from the doctor! Sorry to hear it. Hope you have much better luck finding one in your new digs.

BillieCDD

I  am in awe of the strength and caring of all who respond. Thank you for your ideas and being willing to share.

Another point.. It is embarrassing for me when DH storms out of a doctor's office or when he calls the police because there is a strange woman (me) in his house (maybe I am strange, but I have lived here with him for 50+ years) but I am grateful for the fact that the police did come to our house, more than once, AT DH INSTIGATION, because now there is a record of what is going on. I don't know if this will ever be important, but it might be, for example if violence ensues (it never has).Our local police have been wonderful, calming and caring.

In my case I was hiding the fact that we had problems, but now I am happy that there is a record on file.

Onceadoc

Yes I’m learning that through experience. I think my expectations were higher - like you I was also once a practicing physician. Being a surgeon isn’t a plus in our situation because every day I have to stop myself from trying to “fix it”. Still looking for a new primary care here. Thanks again for your advice and words of wisdom.

Onceadoc

As am I. My first response is to try and protect her (our) privacy, but I can see how the day that some public event occurs will be liberation from the false sense that I can control the inevitable.