New behaviour

Buggsroo

My husband has started a new behaviour. He bites himself and yells. When I asked him why he does this, he replied he just wanted to see if he still feels things. He shrieks and starts making a buzzing sound. His sounds are varied in range and it is sort of like what autistic kids do to deal with over stimulation. 

The neighbours have mentioned it to me, some of them bothered by it. I explain it is a form of self soothing but I have noticed he really has increased doing it. 

He continuously tells me he is going to bed, which can mean he is going to sit outside or actually going to bed. There is no conversation between us anymore, it is sad but I guess this is just more progression.

jmlarue

It's tragic and mystifying what this does to the brain. This must be horrific for you to see and hear. Heaven only knows what the neighbors really think. People who haven't lived this journey wouldn't believe the insanity that becomes our daily routine. When it comes down to self-harm, wouldn't it be better to admit him for a psych eval? Maybe they can find some way to calm that behavior.

abc123

Dear Buggs, I’m so sorry this is happening! I agree with jm. The insanity we deal with is terrible and sad. Maybe an eval would help him. I’m sorry for you both. Please know you are always in my thoughts and prayers.

Ed1937

A third vote for an eval. You wouldn't want this to get more serious.

dayn2nite2

He needs to be seen, even if it’s only to document his self-injury.  You don’t want that to be blamed on you because he’s unable to say what his injuries are from.

His agitation is well beyond being tolerable if your neighbors are bothered by it.

MaryG123

I agree and, like D2N2 said, I’m worried for you.  I think it would be better for you to have him seen and the issues documented than to have the neighbors call it in.  And, hopefully, there are options to relieve his suffering a bit.

Buggsroo

Thank you all, I appreciate this. I know I have to do something, he gets frustrated a lot. I asked him if he wanted to go back to daycare. He said no. Sigh. I will phone the Geripsych and see what can be done.

dayn2nite2

My concern is that he may decide hitting you is the next thing, and again the self-injury, because if they decide to investigate it, that could result in him being removed from your care for a short or perhaps long period of time.

Another concern is that you seem to have an extremely high tolerance for his issues and I fear that anyone looking in from the outside will also decide that he needs a different care environment.  When that happens all your choices are taken away.

dayn2nite2

Buggsroo wrote:

Thank you all, I appreciate this. I know I have to do something, he gets frustrated a lot. I asked him if he wanted to go back to daycare. He said no. Sigh. I will phone the Geripsych and see what can be done.

That’s another concern, that you are asking for his input.  He doesn’t get to decide.  He’s past that.  I fear that the time to place him has long since passed and you haven’t realized it.

What issue would he need to have that would make you say “I’m done”. 

Buggsroo

I have to say thanks again to all of you for your concern. When he bites himself he doesn’t break the skin but yes I am so up to my eyeballs with him. I will be starting my search next week for homes. Honestly I am quite tired of all of it. He keeps waking me up every 20 minutes or so in the morning. I do need some form of respite. 

After million times of him telling me he was going to bed, I snapped. I am past caring in so many ways, I realize I am burnt out. It never really ends until it does end, I am frankly considering running away to the circus.

Jo C.

Dear Buggsroo, I am so very sorry and can only once again imagine how exhausted you must be. 

Since this is really advancing behavior and has implications for self harm including bacterial infection and more, it is really time to get him to the dementia specialist or at least his primary care MD if the specialist cannot be easily accessed. There are indeed medications that can help this and extinguish such behaviors.  As much as you have been beleagured by over the moon behaviors; he too is suffering and really needs relief.

Though I am not saying this will happen; sometimes such behaviors can take an abrupt turn and begin to lash out at others rather than turning inward and harming oneself.

Frankly, since the neighbors have become aware and there is some concern from them, I would seek the physician appointment post haste before someone reports this to authorities as lack of care, etc.  You do not need such a situation to arise to have to contend with on top of everything else and other folks who have not dealt with dementia most often do not understand dementia dynamics well and may misinterpret.

If the behavior is severe and persistent, it may be that he may have to be seen in an ER setting to get him to a GeroPsych setting if that is warranted; I do not know if Canada med centers have Geriatric Psych Units in their hospitals, but a short involuntary admission may be helpful in assessing your LOs condition on the 24 hour continuum and begin appropriate medication while assessing for effectiveness.  Just an option if available. If that happens, then upon discharge from such a unit, he can be transferred directly to a care facility.

How hard is it in Canada to access a long term spot for a dementia patient in a care facility, AND is it expensive for the family or does Canada somehow have a program to defray such costs?   Is there a financial implication in this for you if he is placed?

I recall your stating you would be looking for a placement setting quite some time ago, but it seems it was not the time as he is still home.  You have had a high threshold for the startling behaviors you have been living with for so long; but there comes a time that things cannot continue as is.

Please do let us know how you are doing and how things are going; we will be thinking of you and we truly care very much.

J.

Joydean

Buggs, I recall or I think I do, you saying in Canada there is a long wait list for care facility. Kinda like the VA here. I know you work really hard to take care of your dh and your job too. I’m just praying for the best for you and your love one. Only you know what you can do. Take care of yourself too!

toolbeltexpert

Buggs my dw used to bite herself when she got frustrated a couple times she drew a little blood. I would physically restrain her. I haven't seen her do that in a long while. But it is very concerning. I sorry for a new behavior. Praying for you. I know you'll get it right you alway manage. Hope you catch a break my Canadian friend.

Buggsroo

Thank you all so much. I feel better when I come here. The sad thing is he really isn’t my husband anymore, just a very sad person with dementia. I will be phoning his psych tomorrow and see if I can get some meds for him. He is on trazadone but I think he needs stronger stuff.

I have a list of homes I will be looking into as well. They are near where I live. Usually I can laugh this off and shuffle off the sense of impending doom. I think I have run out of steam. The yelling is much more frequent now so I know what I have to do. 

In Canada they give you a list of homes in your area. When you have chosen five in order of preference, a social worker comes to the home and does an assessment. Then the social worker tries to get a bed for the pwd in the preferred place. It can take months or even a year depending on the severity. 

jmlarue

I would suggest asking his geri-psych for a written evaluation of your DH's current mental status, his attempts at self-harm, and what treatment he is recommending, A few words from him/her regarding the absolute necessity of quick placement in a suitable care facility will give the social worker something to hang their hat on. It needs to be made clear that quick placement is the most humane treatment for him as well as for you. There's no shame in admitting that you are burned out and this is now affecting your own mental and physical health. Remind them that without you as caregiver, they would have no choice but to find him a bed immediately. You shouldn't have to die to get him the care he so desperately needs.

Beachfan

Buggs,

Best of luck with a solution to your latest dilemma with DH, and especially with plans for placement, if that is to be the outcome.  I admire your resilience and perseverance in caring for DH; I would have thrown in the towel long ago.  It is time for some relief for you now.  Take care and look out for yourself; you deserve a break.  

Jo C.

Dear Buggsroo; am thinking of you and hoping that today is a better day in the scope of things. Please keep in touch; we are hoping for help to soon come your way.  Jmlarue had some good input; she has had to fight tooth and nail for her LO too. 

I always tried to think of myself as Brunhilda with horned cap, breast plate and spear when advocating really difficult resistant things . . .

Theme music:  "Ride of The Valkyries"

If nothing else, you would scare them so bad that they will give you anything you want!

J.

Buggsroo

Hey Jo, 

That made me laugh out loud. I am more than willing to put on a breastplate, do my hair up in braids and sing in falsetto to get myself out of this mess. I have left a message with the geripsych about his yelling and biting himself. I made no jokes when I left the message, because that is what I usually do, but wanted to impart the seriousness of what is transpiring. 

Jo C.

Hey back, Buggs.  Giving the Social Worker or Physician or any decision maker a hook to hang their hat on to put your husband at the top of any waiting list is important.

In this sort of dynamic, one does not lie, but one becomes a bit more dramatic in providing details.   You have plenty of ammunition.  You are right - absolutely NO joking or levity when speaking to anyone about what is happening.  It must be seen as serious and heavens, you have had a lot to be serious about.

His self-harming can be stated more dramatically as well as any other acting out that cannot be eased or controlled.

And the big thing bound to get the attention of decision makers is his ongoing penchant for purposeful putting his BMs in the kitchen sink, or on the kitchen counters and his finger painting of same and how he manages to find the ability to do this when you are not in the same room, etc.; his preference to stool in the kitchen.

The more detailed and dramatically stated this sort of thing can be will give the decision makers the ooomph to say, "This is beyond waiting - must get him into care immediately."

AND . . . if you can share your level of health issues from stress as well as the anxiety and perhaps inability to sleep due to his machinations, that can also be taken into consideration. If you have been to the doctor for yourself in the past few months and have any issues such as elevated blood pressure or labs that are skewed, etc, that can reinforce what you are saying.

I had just read a bit on the absolutely awfully long length of time it takes to gain a care facility bed in Canada as well as other healthcare provisions.  I am very sorry that is so considering the circumstances you are living with every day.  This is why it is a best idea to give that very detailed and bit dramatic input to get yourself accelerated to the top of the line.

So wish there were a way to be more helpful, you have done so much with truly horrendous dynamics; far, far more brave and stronger than I would be under the circumstances. 

I so hope this absolute need for placing you husband into care will not cause you significant financial hardship.  Does Canada have a form of Medicaid that will pay for long term care when the patient and spouse would not be able to afford such care?

Something else came to mind - do you have adult children or any family who are supportive in any way?  I cannot recall if you have ever mentioned that.

In any case, I so hope that some help will soon be obtained for the quality of life for the both of you.  Will keep my fingers crossed, but that sure is increasing my typing error rate.

J.

Buggsroo

Hi All,

Yes I am going to amp up the situation. It is around 2,000 a month to get my husband basic care, he can afford it, he has a good pension. Honestly keeping him here is just about as expensive. Plus my peace of mind as they say is priceless; thanks American Express commercials. 

I feel better today because I got to go out, that always helps. I gave him a shower today because he left me a brown gift in the bathroom sink. I just dug out the feces with my hands and put them in the toilet, that is how hardened I have gotten to poo. You will all be relieved, I scrubbed my hands with soap and water afterwards. 

daisyflops22

hi, LO was diagnosed w/AZ in April. Since then, and especially over the past month or so, I've seen his behavior spiral down. He has frequent temper tantrums that seem to last for days. Usually it's because he can't find something, or can't read numbers on his phone. But, today was way different. I heard commotion in the kitchen, knew there was a problem with something because the usual string of cuss words was loud and clear. He couldn't find the coffee filter. Started screaming that 'all I want is to make my coffee in the morning.' Stormed out, bought another filter, and did not speak to me the rest of the day. It's almost 9pm and the only thing he's really uttered to me is that we would get along fine if I didn't move things so he couldn't find them. I asked how he could possibly think I would intentionally throw out the coffee filter. He just shook his head and threw up his arms and said I don't know... and then he laughed.

I told him that more than anything else I want him to understand how hurt I am. And his response was basically nothing. He's become indifferent to my feelings and it's devastating. I have read other posts and articles that making accusations at spouses and caregivers is part of the decline.

My question now is how do I handle it? He's on meds for depression and anxiety, but that isn't going to do anything for this. Is it typical for more meds to be prescribed as he gets worse?

Thanks for listening.