What is right decision?

Sunrise24

My husband was diagnosed with Alz around 2017.  He had been participating in a clinical for just over two years and was holding his own.  They stopped the trial and over summer he was having delusions, gettin angry at me and basically had a psychotic break in September which resulted in police bringing him by ambulance to hospital. Psychiatrist was adjusting meds during that time… He is now in AL memory care and doing well.  With Med adjustment he is almost back to where he was previously.  MC staff don’t think he should be there right now because too high functioning.  He can only talk to staff because the others are too progressed in disease for him to socialize with. He was initially put there because meds were still adjusting and hospital wouldn’t keep him.  I could t bring him home because he was still having delusions and saying he had divorced me… He kept trying to throw me out of house over summer… Psychiatrist says to take baby steps and it is my own comfort level whether or not to bring him home… She said he is an anomaly to them… He can dress, bathe, basically can do most things in his own. His short term memory is shot but his body is in great shape… He keeps getting weepy and says he misses me and wants to be home…I have taken him to family homes over Thanksgiving and he had a great time…. I am very torn about what to do… They want to transition him to traditional AL but I think he will still just sit and watch tv…. He enjoys our outings and going to restaurants and they have all gone well…. I like some of the freedom I have but feel I owe it to him to try and see how home would be with the Med adjustment…. I am paying an exorbitant amount of money (which he doesn’t know about) to keep him there….. It is about 18 miles away and I go every other day…gas getting expensive too!! Thoughts?? Questions??

ButterflyWings

Sunrise - what a beautiful image and name. I am sorry you have to join our circle but welcome - it is a very helpful and knowledgeable group. Best advice my DH's neuropsych gave us upon diagnosis was to check out this forum.

It sounds like your medical team is suggesting this placement is not the best option for him at this time. I wonder how long your funds will hold out for him (and you) during the long haul of this terminal disease? Are you depleting assets to keep him there now, that you will miss when his dementia progresses and care needs increase, as they surely will?

Can you arrange enough help at home to give you regular time off and independence that you enjoy? And that is SO important to maintain as much as possible if you are to survive his disease. The right decision is whatever YOU decide it is. I have been told here, put yourself first. Maybe calling the ALZ helpline (24/7 and free) to discuss with a care counselor can help you get more input from a dementia savvy, neutral source to help you weigh the options.

Learn as much as you can about dementias and do make sure you secure all legalities by consulting with a CELA certified elder law atty. Wishing you all the best in this journey. Getting meds straight was key to me being able to keep my DH at home and to a manageable path through this daily challenge of Alz. Diagnosed in Stage 3/4 (late 2018), he is now 6d. 

This article is priceless. 12 pt Understanding the Dementia Experience (dementiacarestrategies.com)

Good luck to you. You will make the right decision. What is best for you, is best for you both now. 

Lor2014

There are no "right" decisions, but the decisions have different consequences. First and foremost, you need to take care of YOU first. In some cases, the caregiver's health declines faster than the patient because of the tremendous stress of this progressive disease. Also, his dementia is never going to get better. So it's about you balancing your health (emotional, physical, financial, etc.) along with minimizing regret in the longrun.

Just remember that you have to take care of YOU. The better off you are, the better you'll be able to manage your SO's health. This is marathon, not a sprint.

Sunrise24

Hi ButterflyWings!  Your name and picture are beautiful as well!  Thank you for your response.  The link you sent with that article was really insightful.... To answer your question, yes I am spending money that I will most likely need later on.  He asks me if insurance is paying for where he is and I tell him yes, most of it.  He would be so very upset if I told him that I was using his life savings and small income for it.  I can probably pay for a couple of years but after that, I will need to apply for Medicaid.  He is also a Veteran and I have submitted an application to our local Soldier's Home.  They are not accepting new residents for a year or so because they are renovating and he would get very upset right now at the thought of going there because he knows what that would mean as far as ever coming home but if he were able to get there in a few years, they do not ask for a lot of money and I could hang onto some of his income and savings.  I would be able to make a bit of time for myself if I bring him back home.  I just worry about whether or not he could have another psychotic episode which was very frightening to me.  He tried pushing me out of the house (once in my underwear) swearing to get out. One time he started taking all of my clothes and throwing them in driveway.  We had a senior dog who was ill and he wouldn't let her out of his sight and he kept asking me why I didn't tell him she had cancer (which we were never told) and would demand that I take her for rides.... he would get angry with me if we spent any time away from her.  During his brief stay in hospital psych unit, he tried to attack someone with a plastic knife.  I think he was just scared and confused.  He kept saying he divorced me and that he was married to 'Mary" who was a childhood friend.  He was convinced of that for about a month.  He is now on medication that has really helped and he is back to where he was perhaps 8 months ago.  I am thinking of bringing him home for a visit for an hour or so and see how that goes.  I feel I owe him that opportunity because if tables were turned, he would do it for me.  It breaks my heart to see him cry to be with me.  Thank you so much for your input!!!

Sunrise24

Thank you for your response.  I think I may just have difficulty in putting myself first.  During his psychotic episode, he had so many behaviors that were very disturbing and it was taking its' toll on me.  I know if he comes home, it will be tough having to be a caretaker full time but if his behaviors can be controlled with medication, I will be okay with it.  The uncertainty with this disease is awful.  I would hate to bring him home only to have to place him again in 5 months or so.  That would be extremely taxing on my funds......... Sometimes my heart takes over for my head......

Iris L.

Sunrise24 wrote:

Hi  upset if I told him that I was using his life savings and small income for it.  I can probably pay for a couple of years but after that, I will need to apply for Medicaid.  

 

 

Have you consulted a certified elder attorney?  The requirements for Medicaid are stringent.  There is a five year look-back period.  You don't want to unknowingly spend a lot of money and disqualify him.

Also, some memory Care facilities are more willing to accept a Medicaid resident if there are about two years of private pay (cash).

I suggest that you read a lot of threads regarding PWDs who have been aggressive towards their caregiver.  You need to stay in close communication with a geriatric psychiatrist or geriatrician, stay on top of the meds, be on the look-out for UTIs and other things like that, and also keep yourself safe.

Iris L.