New here - looking for emotional support

_sylvester_

Dear All,

Although, writing this brings me no pleasure, I got to a point where I no longer keep it inside and I need to vent, as well as benefit from your wisdom and experience.

I did scroll and read few of the entries, but somehow I feel my situation is rather unique (I am aware of the irony here). In short, here's what's going on:

I lost my mom to breast cancer last year. My dad really struggled since then and he often complained about being lonely as both myself and my brother live in different countries. There are different levels and details and all, thorough the years, contributed to his lack of social connections, including his long term heavy drinking, which, of course, also impacted his relationship with my mom and with us, his kids.
6 weeks ago, I got a call that a neighbor found his unconscious and he was taken to the emergency. Long story short, after some analysis including a TC (which was labeled as cerebral lacunarism), he was transferred to psychiatry and treated for alcohol withdrawal. He spend there less than 2 weeks. The few people who saw him while he was there kept telling me he was 'not there', seems to not have been eating (not at hospital, but before, while he was still living by himself), that he is lost and weak and does not register what is happening.
I had to travel back home for his discharge and had to make a plan, knowing full well that he no longer can live by himself.
Without naming the country, what I can tell you is that AD is not a priority and there are no good facilities available, ones that one can trust to truly take care of the patients. More than that, recently, there was an outbreak of news about private facilities where patients were grossly mistreated or abused.
On top, I also come from a society where there is the judgement for 'abandoning' your loved ones in a facility and not being the one doing the all-hands caring.
With these things in mind, I searched for a private facility and I set my my on one. I have to say, it looks extraordinary, but is super mega extra expensive for the people living there. It is half of my current salary, without counting on any extra services or the medication which so far I had to purchase myself. Of course, the more need for care he will need, the price will also continue to increase.
Anyway, in the 4 days I spend home with him after hospital discharge and until I drove us to this facility, I had told him on different occasions my suggested plan, but he always seems to forget it. I also saw he was totally confused, even in his own home.
Among one of the things that really socked me was that he did not recall my mom's passing.
So, on the day, after a 3 hour drive, I took him there and he was 'admitted' to a separate unit, with different people with AD or other types of psychiatrics problems. This was a sock for me as I had this totally different image of him staying at this serene place, with so many amenities which he now cannot use, as they are not allowed to exit independently that part of the care. While I understand this is for their own good and I am aware of that many AD patients wander around, it was still a shock for me.
He is there for nearly a month now, and 2 weeks ago a psychiatrist saw he and diagnosed him with moderate AD.
He confuses some of his palls there with different relatives, including some that are no longer alive (my mom being one of them). I call him everyday and without exception he's telling me he's at the clinic with my mom as she is sick, or that his mom or dad are sick.
Due to my job, I already had some info about AD and I kind of know what to expect. I have also read several books in these last weeks, including the 36-hours day.
However, I am still struggling. With guilt for putting him there where is not close to family, where he is not visited. With frustration, with anxiety of me not being there. But - I simply cannot move back home to take care of him.
I also struggle with the uncertainty and the fact that I know there is a long road ahead. This has already impacted my mood, my feelings, my personal relationship with my partner and it has been only a few weeks.
This scares me.
Main reason why I decided to write this post is that one of the advices that dr. Pauline Boss highlights is the need to social circle and having a psychological family. I struggle with this as by default I am an introvert and I prefer dealing and solving problems on my own. More than that, I now feel not only alone and that people dont understand my situation, I also feel abandoned. My brother is not involved in any of these and I have the feeling this wont change.
Later this week I am traveling back home and will see him after 3 weeks. I dont know what to expect but most likely it will not be good. But what exactly would good be in this situation? I dont know.

And this is my story as it stands now.

terei

You might want to look into an online(perhaps here) or in person support group for AD caregivers. Your father is in his own reality + likely would not benefit from an actual relative being near him, as long as his needs are being addressed. I think I would try to concentrate on pragmatic issues such as selling any of his assets to help support his care.

When you see him, as much as possible, go along with his delusions. He does not have to be told that his wife has passed or that his ‘pals’ are anyone other than who he thinks they are. Keeping him calm + content regardless of the facts of his situation should be the goal.

Easier said than done, of course. While my mother was declining + in AL + MC, I dont think I slept properly for about 3 years + looking back, tried to hard to control things that really did not make much difference, considering the big picture (of her condition).

AimeeK

I am in a similar situation with my dad. I lost my mom to early onset AD 18 months ago and my dad has drunk himself silly the last 18 months. We have seen signs of dementia, but he hasn't been officially diagnosed. He recently had a stroke and is in rehab. He is not able to take care of himself at home, and I do not live near him. My brother, who does live near him refuses to even see my dad. Now I am faced with a decision. He needs to be transferred to a long-term acute health facility and we need to decide whether to move him into a facility close to me, or keep him in the same city he has lived in his entire life. What is hard, is he thinks he is going home after discharging from the rehab facility. I don't know how to tell him he isn't going home. He has always told us he isn't leaving his house unless it's in a pine box.

_sylvester_

@AimeeK : I am sorry to hear about your situation.

While I don't have an experience as extensive as others here, on most days, I actually think I took the right decision to have him in a nursing home / memory care unit.

I hope you have better ways to cover the financials!

I wish you strengh and patience!

A short update on my father - I went and see him. He seems to be doing a bit better physically (can walk a bit better) and mentally as well (in the sense that he now knows he is there for himself), but since I came back he had a fell. Nothing major happened but that does not mean I am not concerned.

bjohnsen3869

I’m so sorry. I understand how you feel and feel the same with my situation. My dad wants out though. He feels like he is in prison and that he has done something wrong. Doesn’t realize he has AD. Physically fine. I’m having a difficult time too. Just put him in.

I do know, however, that guilt is not a helpful emotion no matter what. It serves no purpose for us in this situation. Let him live in his delusional world. Actually, it’s a blessing. At least, he isn’t begging to go home every time you talk to him or see him.

_sylvester_

Hey bjohnsen3869

How's your father doing?

Mine had a few days that were though (on me). He believed he was at his childhood house (at his parents) and wanted to leave home (where he and mom lived). He even got out his luggage troller and called me multiple times to tell me the bus was full and he could not leave. It broke my heart!

Yesterday was his b'day but I could not be there :( The facility arranged for a cake and he was really surprised about it. I think he really liked it!

Jeri Layer

I have looked at so many memory care units - literally spent the summer searching. Never felt at ease enough to make the move. Lots of guilt. I don't know of a solution or how to not feel guilty. It overwhelms me and I'm sorry you too are experiencing the same.

AimeeK

@bjohnsen3869 Thanks for the reminder about holding in the guilt--we should all remember this! @Jeri Layer I've come to realize no one facility is perfect. I ended up moving my dad to a rehab facility closer to me and the first two days were great. However, the third day (yesterday) was a disaster. He is so angry and taking it out on me. Told me he was going to call a taxi and go home and I don't think he is being very nice to the staff. How does everyone deal with the anger? Do you turn the other cheek?

DCCEPEK

How real all this is to my husband and I. His Mom has mc issues, legally blind and still with us. Anger one mentioned is all she knows.

It is hard to endure her behavior, my husband says she always been mean.

Married 40 years this isn't how we planned our retirement. She absorbs all our time. Totally incontinent but still mobile. No official diagnosis but her doctor is aware of conditions and knows we're pretty much home bound. It's difficult traveling with her even to doctor. 36 hour day and working an action plan set forth by Alzheimers Association. Just denied Medicaid. Still trying to walk it out.