Friday night L attacked another resident. This reflects progression of her FTD but also the lack of stability of her ALF. is it too much to ask that they actually follow their own schedule? As an example, Saturday was the Father's Day lunch at the ALF. Too bad they never told any relatives of residents until Friday, never told the residents, didn't tell any staff (except for the head chef) and it wouldn't have happened unless my wife asked about it and showed the e-mail from the exec dir that I forwarded to her.
So the ALF lawyers told me yesterday that they are expelling her in 15 days. I hired a service to help find a new ALF since this search will be harder. I was already looking for a new ALF for her anyways so I was able to eliminate a number of places (age issues, no vacancy, don't allow for pets). We may need two moves, one to respite and then to a permanent place.
Oh Paul's my heat goes out to you. This FTD is so hard on our spouses and on us!!
We had a difficult time finding a place for Kevan because the ones closest to me refused to take him because of his aggressive and argumentative behaviour. He had only been in Day care and never physically attacked anyone but was verbally abusive,
I hope you find somewhere soon and that it is a good place for her.
paul, my heart goes out to you too! At the beginning of our FTD journey very few (actually only 1 ) ALFs would even consider accepting my husband because he was physically aggressive and too young (58) and too functional. After he eloped from that ALF our options were almost none, so I really do understand the challenges you and L. face now.
Good luck finding a suitable place for her and you.
As an aside, based on our experience I think there are very few facilities (both ALFs and NHs) that are equipped to care for people with FTD.
There are very few facilities ready to deal with FTD. The director of the search agency says she is familiar with it and when I mentioned my wife's neurologist name (who is a FTD specialist) the director immediately said "she is so wonderful."
And FTD isn't the only challenge. Age (under 55), cat, the incident are all factors. We've eliminated group homes (no pets, no private bathroom, not enough residents who are cognitive enough). One place looked good but no memory care unit so she would have to move again as she declined.
She will be farther away. This means I have to be better about taking everything I need when I visit her. Last weekend I forgot some pills but it was only 30 minutes round trip. Now I will be looking at 30 minutes each way and not consider driving at all during rush hour. But I know some of you live 2+ hours from the facility your spouse lives in.
No ALF will accept L. She needs to go 30 days with no incident and show that we made medical changes. I put in an application to Copper Ridge for a 3 week evaluation, this is for reviewing and changing her meds in a controlled environment. She would be seen by a comprehensive medical staff. Hopefully the medical staff will approve the application and I can get her there. This should also improve her treatment for the rest of her life so it is worth the expense. Her psych and neuro both support this approach. If she is not approved I do not know what we will do, they have only one room open right now and they understand this is an emergency.
Hi paul, as an FTD spouse I am truly here to support you, but I'm not sure what kind of support you need. I can commiserate with the 30 day no incident with med adjustments...been there done that. In our case the psych hospital kept him 90 days until there was no incident (just before discharge he smacked someone in the head each month he was due to be discharged, hence the 3 months) and he had a one on one assigned to him.
I am wishing for the best for you , L and your son so this works out. You have my email address if you ever want a private discussion.
Paul, so sorry you are dealing with all this! Sorry I can't offer any help or suggestions...just sending a cyber (((hug))) and praying that a solution will present itself when you least expect it.
What is the answer here? For all of us whose spouses either have aggressive behavior or simply don't want to go to a facility. Are we supposed to care for them ourselves forever? What will happen to our spouses if something happens to us disabling us from caring for them? I'm not in this situation just yet, but if my dh lives long enough, the disease will disable him to the extent that I won't be able to care for him at home any more and then I will be there along with all of you. I wonder about this issue often. If we die first at the hands of this disease, do our spouses become wards of the state? And then what?
I was wondering about that, too. I am not in this situation but I can see from these discussions that many people are. What would the state do with these difficult-to-manage people? Maybe they would lock them up in a state mental hospital (or whatever they call them now).
We live in a brutal world. After we have scrounged around for whatever benefits may be available to us, when all is said and done, it's each person for himself.
I believe you are correct. Like others who have posted on this topic I can't offer anything to paulc other than support. This is because I have, to some extent, been there. I can only speak to my experience in one locale at one point in time.
Some good news. I should be able to drive L to Copper Ridge on Thursday if nothing goes wrong. Perhaps one doctor report is missing now. Had to rush out yesterday and get chest X-ray (wish I knew that last week). Current ALF has been especially unhelpful in this entire process, I had to fill out the assessment report myself, which was probably for the best. Just got contracts to sign, another $500 to hold the bed for 2 days.