Countrymouse Posted November 2018
On My Mind
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Replacing the much lamented 'On My Mind' profile option, this thread is for musings, jottings, whimsies, preoccupations and the rest of the thesaurus for anyone to jot down anything they please.
I can't remember what the maximum character count was before, can anyone else? But anyway it wasn't very many so let's keep to that.
Truth: AL isn’t going to cut it for him. He’s drawing off too much of the night staff, at least without medication, and even with medication it’s just a matter of time before his disease outpaces it. I’ve been so busy alternately begging and crying, offending people and being offended by people, and putting on my stupid cheerful face, that I haven’t even had time to process how awful this is. And I still have a long, long way to go.
The facility DH is in is a delight for AL but not so much for MC so the search begins again. I’m afraid I will find nothing suitable close to home. I afraid the siblings will find something close to their home and then my visits will be monitored for frequency and duration. I’m not kidding - this has already begun to happen and I’ve been to the AL facility every day except one since he’s been there. My sin? I’ve not been staying overnight. I must not care enough.
Sorry for the rant - just like when I was on chemo, I am sick to death of my own problems and have no room for the problems of others. To all the people outside of my misery bubble, I apologize; I’m not really as selfish as I seem right now.
I made an error in my previous post. Depression is NOT rare in Vasc D. They should have picked up on it.
Not surprised that AL is not the right fit for your dh,.You should have been advised of that by the facility itself in the admission process, as well and the medical people involved. Now you have to do it all again, That's disgusting - just plain disgusting.
At this point (and going forward) I wouldn't worry too much about offending people or being cheerful. Being offended - sure. You should be about a number of failures of the system.
Scr*w the siblings. Develop a hard shell quickly towards their verbalizations,. What do they know? Are they living this? One advantage of having a mean mother was learning early that you can please some of the people all of the time, and all of the people some of the time but you can't please all of the people all of the time, and you can't please mother most of the time. Translate that to siblings. So let that free you to do what is best for you and dh and to disregard their opinions. They are obviously very critical and don't have a clue. As has been said on other threads here, those that are caregiving don't get a vote. Let them stay overnight. Actually how do they know whether you stay overnight or not? Whoever is passing on this information needs to stop so they can't micromanage anymore. They don't need to know that or much detail at all. it just complicates your life. Keep the info you pass on to the bare minimum at this point.. He is doing better, worse or the same, then change the subject. You are not going to get their approval, nor do you need it.
Please don't apologize. You are not selfish at all. You are overwhelmed by a heart wrenching situation and need all your energy for that. Have you heard the saying "What other people think of you is none of your business." It's true. Just concentrate on dh and yourself right now, Time later for others.
(((((hugs)))) to you. Keep us updated and don't mind the ugly sibs.
You ARE making progress and you ARE doing well in all this. Remember THAT as you go along with all that is such a mire.
Are the meds he is taking for helping manage the mental stress for him? Because as far as those designed to "cure" a lot of docs now are acknowledging they really don't, and you may be able to cut some out.
You are very right that ALF isn't the fit for him. Looking too advanced. There's no upside here and I think often vascular dementia tough to take and has a component that is so stressful to both him, you, caregivers--just everyone.
This first year of getting dx., place where he can get care, some sort of clue of how division of finances or protecting you OWN assets is worked out, is going to be tough, tough, tough. Be as easy on yourself, as understanding with yourself, as kind to yourself as you an and enlist ALL THE HELP you can get.
Lordy, I couldn't be more sorry about all this. When you CAN rest and get away from it you MUST.
You’re pouring all that you have into an overwhelming dynamic situation. While your own heart breaks. It is cruel of them to try to make you feel you aren’t there enough. Focus on what you have to do for yourself and him. Let yourself run out of rats’ tucheses to give re: the siblings.
I'm so so terribly sorry for all that is happening. It is all consuming. Not staying overnight?? Puh - lease!!! Anyone with any criticisms can go pound sand, take a hike, and a long walk off a short pier. I could say a few other choice phrases but will refrain.
🫂🫂🫂
I know there is no cure and no treatment for Alzheimer’s disease at this stage in spite of all the research. I know he is doomed, I am just hoping for something to help with his agitation and fear.
If there can be ANY peace or quality of life for him, I want him to have it. I will beg, borrow or steal to get it. I can’t sit back and watch some wet behind the ears PA tell the facility staff to keep him hydrated, exercised and to do puzzles with him rather than get on the damn computer and figure out some kind of medicine that can help. I get there are going to be side effects but there has to be a balance. His body is already failing; relieving some of his mental pain is worth causing his body to fail a little more, isn’t it?
I’ve tried my best to place my husband appropriately and I don’t blame myself or the facility nurses for getting it wrong. Now it has to be fixed and that is going to cause him even more distress. I’m so very sorry for that.
I don’t know if I can face more push back from siblings or the PCPa and I’m afraid I’m going to get it in the next couple of days. I’m having a hard time keeping ahead of my dread.
Yes, I’ve made him and myself safe and yes, I’m doing my best to get him meds to calm his anxiety. But because it is ME he asks for all the time, the sibs believe it’s ME that can make him feel better. That may be true sometimes, but clearly not all the time, and clearly less and less often as his disease progresses.
The irony in all this is that I’m losing as much sleep over him while I’m at home as I would be if I was there so maybe the sibs have a point.
You are certainly not being selfish at all. Ignore anyone (family or otherwise) who will say so. Also, God gave mankind two middle fingers for a reason. Use them both on siblings who don't have anything helpful to say or contribute.
I did caregiving for a long time and for the life of me I don't know why healthcare people put such faith in puzzles and exercize for a person with Alzheimer's and flipping out all day and night. Your husband needs a nice, clean, pharmaceutical benzodiazepine with his anti-depressant to keep him melllow. Something like Ativan or Xanax. Maybe even some diazepam (Valium) if he needs something stronger. These drugs in liquid form work almost instantly to calm someone down.
Your poor husband does not have to suffer in such a state and neither do you from the stress of it. Demand the facility medicate him appropriately. His regular doctor might have to prescribe for him. AL is different than NH, or MC. If they refuse call the police and the Ombudsman's office and explain that the facility is refusing him medication. Maybe even the primary care doctor he had before being placed will help if he's still his doctor.
AL isn't right for your husband anymore. He sounds like he needs memory care. You know that you're in charge of these decisions. Not sibling, not adult children, not extended family or friends. You are in charge and you don't owe anyone an explanation for anything you do, or any decision you make.
It will be all right and you'll figure out a memory care facility for your husband.
I know I am weak from worry and lack of sleep so will make a Herculean effort to keep it together no matter what they say and take it all under advisement, but the buck stops with me. My motives are pure but I am unsure of the means at every step and maybe that lack of confidence is what is getting me in trouble.
You are doing the best you can within the system available . Dementia is also unpredictable . Go to that meeting with sibs with your head up . They are WRONG to assume false motives .
Sue - you are doing the best you can under very difficult circumstances. I will dare to say you are doing the best anyone could do under these circumstances.
Yes, the buck stops with you - not with the sibs who I gather you have known a long time. I am glad you are firm on that as well as not staying the night. You are NOT the problem here or to blame for any of it. The system has let you and your hub down. The admissions process should catch those for whom AL is unsuitable. The medical people involved should prescribe meds to help dh's agitation and also know and advise what level of care dh needs.
The sibs don't have a point b/c you are not the solution. Medication and proper placement is.
As to them assigning unsavory motives to your choices, I am appalled. How dare they sit in judgement on you? What makes them the experts and knowledgeable about your reasons for doing what you are doing? I understand that they love their brother and want to see that he has the best care available. Well, he has. You have been and are giving him the best and most loving care possible. The disease has accelerated and he requires something different. However, the system has let you both down. You have not let him or them down!
I hear that you are weak with worry and lack of sleep and pray for you to get through this meeting and this difficult time as best as possible. The sibs sound rather like bullies when they, IMO, should be your strongest supporters.
A little wisdom from a strong lady I know. She said, "I used to be a nice person, and I got pushed around a lot. So, I stopped being nice. I am still a good person and that's what matters."
I understand what she experienced. I stopped being nice to my sister when every chance she got she criticized what I was doing for mother. I got no support or help, just criticism. So I decreased contact with her as I didn't need it. Once mother had passed and the estate was settled I cut contact altogether. Obviously there was a history of dysfunction before the issues with mother arose. I was not accountable to her unless she could prove some wrongdoing on my part, which she couldn't.
I decided during that process that no one - not anyone - sib, children or other family or friends or loved ones would treat me disrespectfully or cross my boundaries in any way and not feel it. This has made me feel safer and more in charge of my boat, so to speak. I pray you cease dreading the sibs and set some boundaries to protect yourself from them. You have enough to deal with as it is.
The steps are clear and you know them and are working towards them. Dh needs memory care and medication. And you need sleep and other self care and support. ((((((((((big hugs))))))))
At a minimum she should be sent to rehab .
Have relatives on our back about getting aides in the home . Which she will refuse.
MIL really needs AL .
Yes, it is related to a fall she had 2 months ago . She ( slightly ) fractured her shoulder , has been in a sling and recently had a friend begin driving her to PT . However we were not aware that when she had that fall she also cut her leg and it never healed . She has diabetes and Leukemia . It got infected . MIL said pus was coming out so she went to the wound care clinic last Friday and they admitted her to the hospital for IV antibiotics , and late yesterday did surgery to clean and debride the wound . The surgery was done because they were fearful the infection would get into her old artificial knee .
She showtimes well , so not sure what will happen . DH is trying to speak to the social worker today . He will tell the social worker the situation at home , stairs etc . Will ask for PT/ OT eval , for ADL’s and IADL’s . MIL does not have a dementia diagnosis .
MIL only has DH listed as next of kin , so the nurse would not give any info . MIL has her partner as contact person . DH would only get a call if she died . The partner btw has diagnosed dementia and is now currently home alone . MIL says friends are coming over to check on her partner at home . We tried to talk sense into MIL last night on the phone , of course that did not work .
We may be taking a trip out there .
You will do great at your meeting with your husband's siblings. I always encourage families to have a sit-down and talk things out.
You're right, listen to what they have to say if they have anything worthwhile to say that can be helpful. You do not have to listen to them complain, insinuate, or passively/aggressively criticize you over your handling the situation with your husband. Many will thinly veil their insults under the guise of caring so much. You don't take that crap for one second. Shut them down if it starts up.
You are the one in charge here and you're doing the best job of it that you can. So, listen to what they have to say. If they're willing to actually be helpful - great. If this meeting is so they can each offer their useless two cents on matters, walk away.
Good luck to you and you will do great.
You also can’t force a stubborn elder , who won’t even put her son ( DH) as the contact person at the hospital . She has her partner who has dementia as the contact .
DH left another message and is waiting for the social worker to hopefully call back to talk about how she’s not safe , falls, and we think she has dementia . We will be driving out tomorrow most likely .
We did speak to MIL on the phone again about her safety . She’s adamant it’s her decision , but also spoke in circles , first she says she knows she has to move , and then she says she will get a stair lift . I said if you move you won’t need a stair lift . Then she says she has no problem with stairs and she just needs to heal .
Keeps saying it’s her decision . She’s definatly not recognizing the crisis . I know this all too well . We’ve been hearing for years she either is fine or will make a change that she never follows through on .
Meanwhile DH’s uncle is saying “ there are legal ways around her refusals if she’s not competent .” And that “ your her son you have to do the right thing “.
DH didn’t tell his uncle that he has no intention of seeking guardianship .
MIL supposedly had a POA drawn up recently and she says she signed it .
My head is already pounding . I can’t do this again with one of our parents . Twice was enough . 3rd time is not a charm , for sure .
Edit .
Well the social worker says MIL seems lucid at this time and is refusing to go to rehab on Friday . We will be traveling early tomorrow morning . The social worker said if she refuses rehab at time of discharge they will have her sign herself out AMA.
She’s not lucid in my opinion . Unsafe discharge failed .
enjoy your trip . Stay off Forum while on vacay !! Forget about caregiving for now . You are on respite .
The PCP appointment was a little tense but fruitful. We came away with a slow to start medication as well as a prn. Now I’ve got to figure out how they determine when to give the prn med. as last night DH again called me, frantic, to talk him off the precipice and into his pjs and bed. Lots of confusion, disorientation, fear and even some crying, but no medication! He is able to sleep afterwards but I’m not! Today I will ask about their definition of “as needed”.
@Burnt, and anyone else with gobs of experience with Alz, when I ask DH the morning after a bad night if he remembers calling me, he says he doesn’t. He also says he doesn’t remember being so very upset. My questions: does the memory of deep distress like that linger somewhere in the unconscious mind? Does it take time to dissipate in the body, like the rush of adrenaline when you’re in danger? Is it possible to experience that much confusion without fear or that much anxiety without physical effect? if not, why on Earth would there be any reluctance to medicate?
Or, is it a waste of time to ask questions like this?
There were times when nothing but boots on the ground would help, and it was a two-hour drive. I wasn't the primary caregiver, not the POA, but my dH and I would go anyway.
Maybe you can go an hour before visiting hours are over.
I don't know if you are able to go or not.
Find out if the AL actually takes on the responsibility of administering the meds,
or do they have a different care plan?
Apologies if I have not kept up about your struggles, hoping this will be helpful.
I think this is the time to go, or reach the nurses station, if there is one at an AL.
"when to give the prn med. as last night DH again called me,
** frantic,
**to talk him off the precipice and
** into his pjs and bed.
** Lots of confusion, disorientation, fear and even some crying,"
When DH does this , call the facility and tell them to give him his med .
Giving him the med each night before he is in such a state would be better . Hopefully in time you can have the med order changed to every night at bedtime if it is noted it is needed.
Unfortunately , sometimes the phones are not answered and you do have to drive there to talk to staff , until your husband gets on a med routine .
It really should not be this difficult to ask for an evening med daily . Sorry you are going thru this .
As far as your question below . I’ve seen it both ways . Some are exhausted the next day after a tough night , others act like nothing ever happened . How do you know your DH is able to sleep at night ?
It seems doctors are all over the place regarding meds . My sister’s neurologist only gave her Aricept . Waste of time since she’s past the point of that doing anything . The PCP , addressed her anxiety and agitation too aggressively in my opinion . Two new meds at once . She is refusing the med she should be on , Seroquel , at night . She won’t take it because she says she’s “ not schizophrenic, or psychotic “. She googled what Seroquel is for . But it is used very often at night for Dementia anxiety and agitation too . However she takes the Xanax during the day which is not a good drug with Lewy Body . But she is willing to take that one 🤷♀️🤷♀️🤷♀️. She’s been sleeping more during the day . In my opinion she should take the Seroquel at night ( it worked well for her when she had delerium in the hospital ). I think the Xanax and Aricept should be discontinued .
He SAYS he’s sleeping at night and he isn’t falling asleep during the day while I’m talking to him like he was at home. But he obviously isn’t a good self reporter.
I think I understand a little bit better about the juggling act some meds require. Heart failure - you don’t want them to retain fluid; nighttime urine incontinence - you DO want them to retain fluid. You want them relaxed but you don’t want them dizzy or falling down. Not sure what the contraindications for these new antianxiety meds are and if they play nice with all the other things he’s taking. All are above my pay grade I’m afraid. It will be interesting to see what happens tonight.
Send, I’ve been all over the place on the forum with my issues, not knowing where to park. There are so many overlapping concerns! I’m getting good, actionable advice though, from posters I trust and admire, so it’s paying off.
I’m about 10 minutes from the AL facility and for the first week I was maintaining DH’s meds myself. Big mistake, my fellow newbies! Relinquishing control is scary but if you don’t, it makes it harder for the facility and the PCP to work together and pivot when it’s necessary. One lesson learned; many, many to go.