My Dad had a stroke and heart attack in March of this year, and has been staying in AL since April. He has been difficult with staff at times - refusing to take medications, complaining he wants to leave, cursing at the nurses, etc. Other times he is fine and accepts where he is at and is cooperative overall. He has moderate cognitive decline (beginning stages of middle dementia, although not officially diagnosed by a doctor because he refuses to see one. He also has aphasia and cannot read or write, and I am only able to understand about 10% of what he says.
Last weekend my husband and I came to visit Dad in AL and he was in the lobby and told us he wanted to leave. We said he couldn't take him out and went upstairs to his room waiting for him. He left the building on his own and was out in the parking lot refusing to come back in. I had to call the police to get him back in the building and everything seemed to calm down.
On Sunday I get a call from the head nurse that he is cursing out staff, complaining he wants to go and needs to be watched over so that he doesn't leave building. They told me to come pick him up, bring him to the hospital for a psych check and that he couldn't come back there. This is a whole other story, and something I am taking up with AL separately since there was only one incident where he left.
I take him to hospital, and he is in hypertensive crisis, O2 of 75 to 80, and they tell me they think he had a mild stroke two days back. He is admitted and then tried to escape hospital, was hitting nurses and need to be restrained. Turns out he was retaining urine due to enlarged prostrate, and once that was dealt with by putting in a Foley, he was much better and back to his normal self (although his speech is more impaired again due to second stroke).
AL and my Elder Care Attorney recommended Memory Care for my Dad early on before we knew about the retention. As I thought my Dad would only be in hospital a couple of days and would have no place to go since I work full time, I booked him at one. Now that he is better, I don't feel comfortable at all bringing him there. The people are much worse cognitively then where my Dad is at, and I know this will make he very nervous and worsen his dementia.
Question - if I bring him home with me for a couple of weeks (no AL local to us will take him with Foley), can I enforce somehow that he go to AL after that? My Dad wants to live with my husband and I, but we both work full time and travel for work, so this would need to be a short term situation only. What do I do if he refuses to go to AL in a couple of weeks, or I am better having him transferred from hospital to MC and then work on finding AL from there? I don't know how many AL places would be willing to take him after being in MC.
Sorry this is so long - but I just want the best place for my Dad, and also something that I will be able to manage. I am POA and have Advanced Medical Directive. No guardianship.
He is definitely not coming home with us now or in the future. I know deep down he will be better cared for at MC and i have to let go of my guilt. The place seems really nice, and they sound like they have a lot of activities he will also enjoy. Country Mouse i agree - it would be too much working full time. I am having a hard enough time balancing everything while he has been at AL because there is still a lot to do, paying bills, getting him to appointments, making sure to visit enough - etc. I am always feel guilty that i am not doing enough, but i know i have to take care of myself or i won't be any good to him (or me).
I had to laugh about probably not being a Pit-Bullie igloo. Yes, i could probably stand to be more like that. It has been hard with my Dad as i come from an Italian family and you learn to not question your father. ;) I am learning to be tougher with him when i need to, but I'm definitely a work in progress.
And yes, global aphasia was diagnosed as a result of the stroke. He wasn't found for over 24 hours, and there was too much oxygen loss to the brain. He can't read, write, or hardly speak. But he can also dress well, do his ADLs and just looking at him, you would have no idea. He also will give short answers to questions - yes, no, or nod his head in agreement, and at first glance you would not know anything was wrong. My dad got frustrated with his electronics for the same reason and gave me back a coffee maker and DVD player we had gotten him. There is a website i found that sells radios, DVD players, clocks, etc for people that have dementia that are much easier to operate so I am going to try that route and see if it helps.
Thanks to everyone who replied. It really helped. Sometimes i get tripped up by over-analyzing everything, and you guys helped me see things much clearer. I am so appreciative of this group - it has been a life saver to me (on multiple occasions)! Thanks for being there.
Also, until he is definitely stabilised and has been for a reasonable period of time, it's going to be very difficult to assess accurately what he needs both now and for the foreseeable future. So if I were you I should avert my eyes from the other residents (who, moreover, will probably turn out to have much more residual personality once you get to know them a little) and stick with the Memory Care plan until you have a better one in hand.
Aphasia to me is both really different to deal with than the various dementias AND yet in some ways most similar to Lewy Body Dementia. So it’s very frustrating to get properly treated as the default is to assume they all have the usual Alzheimer’s. I have a decades long friend in her early 60’s who has primary progressive aphasia & is now in locked MC (yeah had multiple escape attempts). Her communication is almost totally by mime & to talk with someone who “mimes” really requires lots of patience and t..i..m..e & knowing their past to be able to reference what story they’re trying to tell you. The sooner you can get him into a MC, the better as staff can get to know him and start to communicate with him now while he’s still able to speak & be interpreted. For my friend, she now cannot write, but she can totally get dressed & very well put together herself (hair, makeup, accessories) & gets mistaken for the administrator of the MC by visitors as she can smile & nod with the occasional “yes”, “ok”, “really”, “no” “wait” said by her. It is sadly amusing. Other than aphasia, she is healthy & could live another 20 years.
I agree with the others.... do NOT move him into your home.
I’m guessing that you aren’t enough of a Pitt Bullie personality to get your dad to do what you ask of him. If so, moving him into your home will be a disaster as he’s gonna fight you & your hubs on any decision making. Plus he will find a way to escape & cannot be left alone at home while the 2 of you are at work. My friend got to the point in her beyond lovely home where she eventually broke every appliance and electronics as she couldn’t do the proper sequencing to use them. Yet was aware enough to know to clean up spills or remove the damages. Locking doors, setting alarm & thermostat flat could not be done. But yet you didn’t immediately know things were amiss if you dropped by as everything looked fine at a distance.
I totally agree with you about the geriatric psychology/psychiatry eval. Here is where i am stuck though. I have tried numerous times to get this done in hospital (he has been in 3 so far), and also at AL through Home Health Care. Because he has aphasia that affects his speech, no one will touch this. They all tell me that he has some type of dementia / cognitive decline but that without speech it's hard to say 100% what it is. Most doctors are telling me vascular dementia, but no one will put that in writing.
I think in the back of my mind that is also why i feel guilty. If i knew it was definitely this or that, it would make the decision much easier to live with. I even tried to get him admitted to a psych / rehab facility just so they could assess him, and 4 places so far have turned me down.
Also, as a fun side note, no one will declare him in writing as not having capacity to make his own decisions. A total tricky and crazy situation all the way around.
After she broke her hip, she was cognitively pretty much knocked out by the anesthesia involved in the hip repair, and was never again able to live independently.
Although geriatrics was not my specialty, I was a practicing speech therapist and knew some of the ins and outs of types and symptoms of aphasia. I wanted differential diagnosis regarding my mom’s cognitive losses vs. her communication deficits.
I ultimately came to realize that her level of actual functioning was ultimately more important to making life decisions for her than being concerned about what the reasons for her functioning were.
In my present caregiving role we have access to a very skilled therapist (assigned to her AL) who is able to prescribe and adjust dosage of medications. We offer our observations to her concerning my LO’s ongoing demeanor and behaviors, and the therapist discusses her recommendations with us.
Perhaps you could approach some of your dad’s medical contacts with YOUR needs for getting him the kind of help that will best serve him. Some of the professionals who are not “stepping up” may not realize that you and your dad will be in limbo until you get the tools you need from them, especially in respect to a simple statement that he is presently not capable of making decisions unaided.
A letter containing four descriptive sentences has been very helpful to me in my current caregiving gig. Maybe give it a try.
My thought is that if he was so drastically changed and so suddenly that it was the urine issue. However, you wouldn't know if he is still retaining unless it was removed, and I don't think an AL is equipped to deal with Foley issues, though the memory care may have staff either LVN or RN who can deal with it.
I think his personality change happened due to the urine retention; people who can't identify that go pretty crazy with it. But looks like a bit of a stroke as well.
Can you think of getting him into a memory care that has with it an AL also.
Beg the doctor for rehab coming out of the hospital, because they DO have RN and LVN and perhaps can work on his stroke stuff with speech therapy and buy him the time to see if foley can be removed and not have urine retention recur. This also gives you time to check out memory cares.
So I am thinking buying him time in rehab might help?
Patients with suspected cognitive loss don’t get to “refuse”. There is information that YOU need, as his loving caregiving daughter, to provide the caring, supportive living environment he needs to be safe, comfortable, and monitored.
You have written about some serious circumstances presently identified about your dad’s health, his behavioral difficulties, and the recommendations you have received for his future care.
None of these seem to suggest that “ bring him home” would be a positive consideration at this time. Patients in MC units present with many differing issues. Your father may or may not appear to you to be more or less cognitively impacted than he is, but HIS needs, as you have described, are significant.
His ability to function in an AL would almost certainly be based on HIS issues, and not previous placement in an MC. One of the reasons for having a formal assessment of his many issues is so that YOU will have as clear cut a perspective as possible regarding what his present needs TRULY are.
It may be possible for a trained specialist to develop a medication plan that will allow your father to function more comfortably in a group setting, or because of his previous neurological issues, maybe not.
If you bring him to your home, he will almost inevitably want to stay. You and he both will then face the painful experience of removing him from something “temporary” to what he really needs now.
I take care of a three year old with special needs, whom I cherish, and also have responsibility for an equally cherished 90 yo with dementia, who had to stay with me for 10 days following a bad storm, just after we had begun the long tragic process of dealing with her loss of independence. When she ASKED me if she could stay with me, my heart broke in two. Only the knowledge that it was an impossible request allowed me to continue the diagnostic process leading to her placement in a very good MCU close to my home.
Your dad dad may be angry at you, or just angry, but you as his caregiver are learning the awfulness of loving without having a decision that will satisfy all involved as being what each wants. Give yourself the credit you deserve as a loving and conscientious daughter.
Dolly is right that i am stuck thinking with my heart a bit (or more than a bit), and need to switch that over to my logical side. It is really hard as you mentioned TNtechie that the personality issues happen overnight (or so it seems to us), and it is just tough right now for me to accept that he is moving here but my first priority is to make sure he has the best care. It's one of those things were i always promised my Dad he could come live with us if he got sick, but with the dementia, refusal to take medications, etc., his aggression, it wouldn't work here. My Dad is very hurt and angry with me, and I am not sure how to make this better for him. I did explain this is where he will get the best care, and because we work - we wouldn't be able to provide the same level that he needs. Didn't really work, but i guess time will tell if he accepts this eventually.
I have a durable POA, so do you think i will still need guardianship?
I would get a letter from his doctor recommending that he be placed in memory care. Show it to him, tell him that when the doctor thinks he is safe to go home and has notified you in writing of this, you will consider that option. It will never happen.
When he goes into the facility, don't hover over him, let him adjust to his new surroundings, meet new people. For the first couple of weeks I would stay away, then visit possibly a couple of times a week. Limit your phone calls too.
I think that right now, all you need is the durable POA, see what he does and go from there.
My best, I know that this is not easy.
If your POA is springing (takes effect only when Dad becomes incompetent) then you need to get a letter from a physician that Dad is no longer able to make decisions in his own interest. Depending on the POA language, if your Dad continues to be uncooperative, you may need guardianship.