Dealing with slowly losing my husband

PaulaJM

I am new to this forum, new to dealing with advanced dementia, new to feeling lost, new to not recognizing my husband, new to keeping secrets from others...to protect my husband, the list goes on and on.  We are in the process of changing our Neurologist, all I can get from him is that he has advanced dementia, I asked is it Alzheimer's, he would not say yes or no.  When asked for help with my husband being violent, I was told contact his primary care.  We will be seeing a new Neurologist in December.

I just want to scream...I don't know if I have the strength, I have been telling myself this over the past 10 months...I seem to get enough strength to continue caring for him each day.  I love him and this is so hard.

Sorry for the venting, I need something.

Crushed

We have all been there  In 2010 My warm loving delightful brilliant physician wife held the highest position in her area in the Federal government.  By 2017 she was in a locked residential facility by 2018 she had no idea who I or her family was .  She is there today  All I can say is that in the 7 years of decline I did everything possible to giver her the best life I could.    
 
Just take it one day at a time  squeeze juice out of each day

TyroneSlothrop

Gosh, PaulaJM, no apologies for telling your story! I think we all have different experiences, in my case differing from moment to moment.  Not recognizing me (married 47 years), then insisting on my love and help. A brain that took her to Stanford, Brown and Yale, now disabled from learning anything new.   

Your mention of violence stands out (to me), and I want to be sure you have support in an emergency like that, and not have to wait for a new doc in December.  

Please know you have sympathy and eager listeners here. 

Arrowhead

I’ve been battling this disease for more than 6 years myself. We all want to scream from time to time, and once in a while we actually do it. You do have the strength; you are much stronger than you realize. I wish I could find the words that would completely ease your mind, but they do not exist. Just always do the best that you can and don’t feel guilty when it’s not enough. 

Ed1937

Paula, welcome to the forum. Sorry you're dealing with this too. My wife only saw the neurologist twice. Once for a lot of diagnostic testing, and once for diagnosis, so maybe I don't know what you should expect from a neurologist. But I feel, and I may be wrong, that a neurologist should have more expertise in medications for aggressive behaviors than a PCP. Am I wrong? If not, finding another neurologist is certainly in order. I hope you are able to find help for him and for you. When you have your visit next month, you should probably ask him/her if there's a way for you to contact him/her if you need him/her before your next visit.

Ed1937

I should have asked if he is getting physically violent with you? If so, we can give you some good tips.

PaulaJM

Thank you all for your comments, sharing of your stories, and advice.  I appreciate it more than you know.  Thank you for the welcome.

PaulaJM

Yes, he has been violent with me.  It has been better lately, because I can see the signs and I try to walk away and give him some time.  Any advice you can give me there would be great.

M1

Paula, there are some old threads about preparing for aggression or violence. There's only so much you can do though: in truth he may well need admission to a geriatric psych ward for stabilization on medication. Keep your cell phone with you at all times, and identify a room in the house where you can lock yourself in if necessary. Pack a small bag of essentials and put it in the trunk of your car in case you need to leave on short notice. Lock up any guns and ammunition.

In my opinion, that borders on malpractice for the neurologist not to have dealt with your concerns.  The pediatricians do better than adult docs in this regard, they are required to report suspected abuse. Do not hesitate to call 911 if it happens again.

storycrafter

Our primary care doctor, a gp family doctor, prescribed antipsychotic and other medication for my husband until we could get in to see the specialist, a psychiatrist, to manage his meds. It was a lifesaver to get immediate help.  By the time we saw a neuro, he only made minor suggestions/additions the first time we saw him. After that our pcp has managed his meds.

Don't wait. Surely a gp or pc could provide some immediate help until you get in to see a specialist.

MaryG123

It is a psychiatrist who manages my DH behavioral issues.

ElCy

Hi Paula, I had a similar situation with my husband. He had no follow up after he was first diagnosed with MCI. I alone witnessed his steady decline. I occasionally messaged his PCP about behaviors and the doc would call in prescriptions. I was too scared to offer the new meds to DH as I didn’t know how he would react.

Eventually I had to call 911 and that was the best thing. My DH finally started receiving the care and meds he needed and I finally felt I had a team beside us.

Ed1937

PaulaJM wrote:

Yes, he has been violent with me.  It has been better lately, because I can see the signs and I try to walk away and give him some time.  Any advice you can give me there would be great.

Paula, as has been noted, there are several older threads on this subject, but I'll try to give you some things to consider.

 1. Make sure anything that can be used as a weapon (tools like screwdrivers, etc., kitchen tools and utensils) are out of sight for him. Absolutely no guns, ammo, knives, etc.

2. Always have a cell phone on your person, fully charged. 

3. Identify a room that can be locked from inside, and keep a cell phone charger in there. Make sure (and this is a big one) the room has a window that you can climb out of in case he breaks the door down.

4. If possible, leave the house instead of locking yourself in a room. Identify neighbors that would be willing to assist you if needed.

5. Contact the local police department to let them know they might possibly be called for help, and make sure they know that he has dementia, so they can send the best people to help in situations like that.

6. If police need to be called, consider asking them to take him to a hospital where geri psych services are available, if there is one. Otherwise, any hospital will do, especially if they have psych services.

7. Once he is in the hospital, refuse to take him home until he has been stabilized to make it safe for you and him to go home. Regardless what they tell you, you do not have to take him home until the threat is no longer there. They might tell you they will release him to an area outside the hospital, but that is against the law, unless he has a suitable place to go. It is their responsibility to find another facility to meet his needs if they are unable to do so. But you have to stick to your story that you will NOT take him home, regardless of how much pressure they might try to put on you to do so.  

8. Best of luck to you. Hopefully others might add to what I've written.

Jo C.

Hello Paula and a very warm welcome to you.  I am sorry for the lack of care and responsiveness you have received from the initial Neurologist which is so terribly inappropriate..

We had three different GeroPsychiatrists over time that were absolute duds and similar to what your experience has been.  Horrible with little bothered to be assessed or done with scant to zero followup on nothing.  Then we got to an excellent Neurologist who was wonderful and a very effective professional who cared.  It made a huge difference in many ways including appropriate prescribing.  He became part of our care team and kept things in good stead; in fact, he even found an earlier unidentified problem issue that was able to be managed that was very important and again, made a significant difference.

There is no way to tell in advance how any physician will measure up in provision of care.  Like any other profession in the world, they are people just like all of us.  There are good professional performers and poor performers.  Your Loved One (LO) is blessed in that you are taking very good care with your oversight and are being an excellent advocate on his behalf.

As for safety issues if your husband has indeed become or does become a physical threat to you, I would add a bit of input:

It is always a good idea if there is a Loved One with dementia in the house, even if non-violent, to make a call to the local police department and ask if they have the capability of entering that information into their computer system and if they can also insert a photograph of your LO.  Most agencies can do just that and it is very helpful.  They would have your address, names, phone number, and add the diagnosis. That way, if there is ever a call made to them as an emergency in any way, the unit making the response to your home will have that information come up on their car computer. If your LO has wandered and is lost, they will have a photo and personal information.

If there is an inkling of a threat of possible physical violence, it is  absolutely an emergency situation to have your LO seen by the specialist to obtain adequate assessment and medication as appropriate.  Sometimes, our LO is best served by a short term involuntary admission to a GeroPsych Unit where they can be assessed on a 24 hour continuum and have medication adjusted while observing for effectiveness and any side effects.  GeroPsych is by far the best choice for care of a dementia person as a regular Psych Unit is not focused on that sort of dynamic and not as effective or insightful as GeroPsych.   Though you may not need  this right now, you may want to screen and find out which hospitals/med centers have such a GeroPsych Unit so you have that knowledge at hand if ever needed in the future. It may not be, but knowledge really is power when dementia enters the picture.

If the threat of violence is actual you must as mentioned, have your cell phone on your person at all times, and if there is any threatingly severe agitation or lashing out; get to a place of safety either in a locked room inside the house, or from the outside if you can get outside.  Contact the 911 number right away and let the officer know about the violence AND that your LO has Alzheimer's Disease; that is important.  NOTE:  When a LO is in such a state, it is best to let the responding officers who arrive to know that an ER admission with the possibility of further admission to GeroPsych is what is requested as necessary. The officers do NOT transport the person with dementia themselves; they will call an ambulance to do the transport.

 Not only guns and ammo need to be removed from the house when your LO cannot see you doing that; kitchen knives, scissors, mallets and other such possible to be weaponized items need to be locked away; tools such as hammers and wrenches need to be removed; baseball bats and golf clubs also best removed, anything that can be picked up in a moment and used as a very real weaponized threat needs to be removed.  When someone is severely compromised with severe agitation and prone to violence, they will usually act in the split second according to what they are feeling inside themselves, lashing out without any concern or ability to realize any consequences in that moment or if at all even later.

Be sure that you do indeed have a fully charged cell phone with you at all times, even if you have to wear a fanny pack or clothing with a pocket.  If there is a locked room to get to, that is good and call 911 immediately. NOTE:   If you can get outside, then be sure you always have a key to the car on your person or hidden in a place you can access it right away. Especially if it is cold winter. 

In such a situation where you may have to get out of the house, it would be best to have a small get away bag in the trunk of the car with change of clothing, some of your prescription meds if needed, a credit card, some cash in an envelope, and any really important papers such as bank papers for your accounts; deed to house; insurance card information or actual cards; copies of your IDs including your driver's license if you cannot get to your hand bag to take it with you, and copies of important telephone numbers.  A little safety bag for all intents and purposes.  Since it is winter, you may also want to have a warm jacket, hat and gloves in the trunk and perhaps other shoes or even overboots if possible.

BUT remember you will need to have that key access to get into the trunk.  Upon occasion when responding, the police seeing the person with dementia is calm and actual battery has not taken place, will not be able to take action because that is a violation of a person's rights. The person must be an immediate threat to involuntarily be taken anywhere, so that get away bag can come in very handy.

It is true; whether your LO is in the ER or admitted to GeroPsych or any hospital admission for that matter, you cannot be forced to take him home again. Period. That is absolutely true.  You simply refuse stating you can no longer manage the needed care; that it is a danger to both of you and you cannot provide the acuity of the amount of care he needs and he must be placed for his own well being.  Then stick to it. The Social Workers or Case Managers then must work with you to effect transfer admission to a care facility when one can be found. Sometimes that may even mean several days. If the first placement is at a less than desired facility; at least he will be safe and secure and you can transfer him as you wish when a bed is available in your desired facility choice.  

In the meantime, though you are in the midst of so much going on, as soon as you can, it may be a good idea to begin an assessment of a "Plan B," need if it ever arises.   That is; an alternative living situation.  You can begin by screening care facilities online, and then making a visit to those that appear to be good choices.  This way, if something unforeseen arises in the future, you will have a good idea of what choice you would make. This saves you from having to run hither and thither under stressful time constraints.  This may never be needed, but it is a valuable bit of knowledge to have as quite unexpected things can happen so abruptly.

Not meaning to scare or overburden you, it is just a lot of information that we share here amongst ourselves based on experience of others who have "been there." Much of this need not be done in the here and now; it is information to use if ever needed when you are able to get time to get to it.  This is such a good place to land when facing dementia with a Loved One.  We are all here in support of one another and that now includes you too.

Sending warm thoughts your way, let us know how you are and how things are going; we will be thinking of you and we truly do care.

J.

PaulaJM

Thank you everyone, for your informative responses and your kindness to me.  I so appreciate it.  Sometimes I feel all alone.  There is so much I don't know or didn't know, and you have helped me a great deal.  My plan is to keep my husband at home with me.  I know that may not be realistic, but it is what I am praying for and what I promised him.  I will take all of your advice on the safety issues, be assured there are no guns, and after reading your posts, I have hid all knifes, sticks, scissors, etc.  

I will keep you posted.  Again thank you all, from the bottom of my heart.

Paula

Ed1937

Paula, I'm glad you're finding the forum useful. Jo's posts are at times long, but they are packed with excellent information. We are blessed to have her.

You said " My plan is to keep my husband at home with me.  I know that may not be realistic, but it is what I am praying for and what I promised him. "  Please don't promise that again. There might come a time when you have no choice but to place him. If that happens, the promise will make it harder to do what needs to be done for both of your benefits. You can always say "I'll keep you home as long as I'm able to give you the best care at home". Then you can do what is best for him and for you.

PaulaJM

Ed, thank you for your words, I won't make the promise again.  I will do my best to ensure he has all the care he needs.