Needing Support

AnnMB

  DH was diagnosed with Alzheimers in early May though we know he had memory issues prior to that.  He is on medication to help him sleep and to help ward off psychotic behaviors. It does help him sleep but we still have behaviors that are disturbing.

• He does not drive and hasn't for almost 5 years.
• I took his knife away from him when he said he could really hurt a person with it. He hasn't missed it at all. We have no guns as we couldn't move them across Canada.
• I have cleaners come in every other week to clean the house for me.
• I have a lawn maintenance company come in to do the lawns (fertilizer, weed and bug control and sow seed if necessary).
• I have a company coming in to tend to 90 feet of hedge.
• Grandson mows the lawns, Son weed whacks, and Daughter-in-law will take him for drives when she can.
• Son and Daughter-in-law will come anytime of the day or night to help calm DH down when he is having a spell. They are awesome and supportive.
• He has a POA but not Personal Care Directive or Will. The lawyers and I have most of that taken care of.
• We are waiting to see a specialist and the doctor is surprised we haven't heard from her. I was told up to 6 months wait time.

I applied and got respite twice a week for 2 hours each time. After the third visit the lady had to take 4-6 weeks off. DH really liked her so we decided to wait it out. The wrong move. I called and the file has been put out to get more days and hours. I can get up to 100 hours per month of help and I pay a small part of the cost. The part I pay is tax deductible.

DH's behaviors are such that he knows it all about lawn care and gardening. He is verbally volatile to family when it comes to us not knowing anything and this has been going on since April. With me he gets really bad telling me to shut up, stop being a "dumb/stupid twit" and a few other words that are foul. These spells last up to 10 hours and his story changes each time he tells it. He will also order me to do things like mow the lawn right now. If he comes in to rest, he could refocus onto something new. Today he moved from bad weeds in the lawn to his health care card and not finding his wallet he had put away.  He has also taken off on me to the neighbors and once down the street to get the police to put me behind bars. The neighbors know he has Alzheimers and were out their doors fast to help me when I screamed for him to get off the road with a school bus coming.

When these spells are over, I am exhausted and will often sit in a chair and cry. Family thinks I need to see a therapist but I don't know how that will help exhaustion. Unfortunately he thinks he is fine and is unaware of his condition. I've tried but he won't hear of it. It makes him worse.

Today I decided to let him rant on about the lawn having weeds in it and all of Nova Scotia will be infected with it (grass has gone to seed). He left the property so I had to get him and then watch him so he wouldn't leave again. I didn't speak to him only to ask if he wanted a drink of water or to sit and rest. He came in to rest and then out the door again. When he finally came in to rest, he went downstairs to check on "his things" and then was on about his health care card and wallet. He had put it away and couldn't find it. Drawers and folded laundry were tossed around Finally I realized what he was looking for and told him where it was. He sat down holding it and calmed down almost 5 hours after he became agitated.

Tomorrow I am calling Alzheimer Nova Scotia to get help, see if I can get him into a day program and figure out how I can have some time to myself. Since May 20, I have only had 2.5 hours to sign papers at the lawyers and get groceries. I will have 3.5 hours today and I've spent it looking up info and finding this group.

Thank you for listening to me rant.

Ann

Ed1937

Ann, welcome to the forum, but sorry you have reason to be here. But the good news is that you've found an excellent forum, where people help one another, understand what others are going through, and we support one another like family. This is certainly a road nobody wants to be on, but we genuinely care about each other. So anytime something is on your mind, just post, and you will receive empathy and caring that is hard to find anywhere. If you have local support groups in your area, they can also be very valuable. 

It sounds as if you have family involvement, and that is priceless! And if you can get 100 hours a month respite, that should also be a big part of helping you get through this. Many people don't have these things, and I don't know how they do the things they do.

toolbeltexpert

Ann I can't add much, it is so good to hear how much help you have around you. But bad behavior is so hard to deal with and it is always the ones that are closest that get the brunt of it. It sounds like you've got a handle on the other important stuff.

Taking care of your self can be hard. But you have to take care of you to be able to help them. My dw has family in Nova Scotia, we've  never met but she used to write faithfully. Not away more.

Feel free to rant Ann.

jmlarue

You have my admiration for both asking for help and accepting help to relieve some of the caregiving and home maintenance burdens. This is a huge. A lot of caregivers struggle to find or endure the relentless task of jumping through hoops to get the help they need. It sounds to me like you have managed to create a pretty good safety net of family, neighbors, and paid help. Good for you. You're doing an awesome job and you can chalk this up as a "win" for yourself.

The toughest part is coping with our LO's irrational and narcissistic behaviors, over which they have zero control. Personally, I find it hard some days to dredge up the unconditional love and appreciation I felt for my husband of 54 years when there is no longer any reciprocity on his part. I have always been mystified by the people I've known who have lived their lives in abusive relationships. I can only assume that they are able to endure because their abuser is still able to prevent their leaving with the periodic show of remorse, apology, and promises to amend their ways. However dishonest it might be, I wish my DH had the capacity to throw me a bone once in awhile. He can't. He won't. I know that this reality will eventually drive me to place him in the care of strangers.

Feel free to come here and rant when you feel the need. We all do it from time to time. I think it's part and parcel of the self-care we are all cautioned to not neglect. 

Pat6177

Ann, welcome to the forum. Congratulations on being so organized and lining up help with housecleaning and yard care. You didn’t say what kind of a specialist you are waiting for an appt with. Maybe someone in his medical team will be able to adjust his medications so that the episodes will be less frequent and/or less intense. 

When one of my good friends told me early on that I needed to change because my DH couldn’t I was rather upset with her. I’ve come to accept the truth of that. And that’s where a counselor might be helpful, especially if they have experience working with ALZ caregivers. There may be perspectives you could adopt and ways of reacting that might ease the intensity of the episodes. Or ways that you can detach a bit from what is going on so that it isn’t as draining for you.

Ed1937 posted a few weeks ago about a caregiving class that he attended virtually and he felt that it was quite helpful. You might want to page backwards and see if you can find his posting.

Keep reading on here. You’ll find how others cope (or not). And you will get support! You are doing a great job! Hang in there!

Edited to add: I just read the thread about being new to this forum and needing support by Debbie 1128. You might want to read that thread, lots of good advice there.

AnnMB

Thank you everyone for all  your kind comments. They are truly appreciated.

Having so much in place has been a blessing but there is still more to do. Some I can't do until I get respite. Others I need to shop for. Meal planning is one. I'm going to try and do 6 individual meals for us to have on hand in the freezer. All the same (meat loaf, mashed potatoes, and vegetable).  Then I will branch out to do another meal and hopefully will have several in the freezer all the time. Family will help with the meals and hopefully I can get the glass containers I need. I'm going to do the hamburger with the plastic containers I have and will have to heat them in the microwave.

DH's care team is small at the moment. We have an excellent family doctor and are waiting to see the dementia specialist. We have continuing care who helps us get respite. I'm not sure if the team will get bigger or not at this time as I haven't called the Alzheimer Society of Nova Scotia. That is today's job.

I am hoping that today is going to be good enough to plant cucumbers. I have a few inside jobs to do and hopefully they will get done.

Jo C.

A very warm welcome Anne, from the beautiful country of  Nova Scotia that has the kindest people.  We are delighted to meet you.

I so hope your husband's medications can be adjusted soon; you should not have to live with such 24 hour conditions and of course, his delusions and acting out also even affects his quality of life.  I am so sorry and can well imagine the stress and worry you are carrying.

Because I do not know Nova Scotia, do your hospitals have Geriatric Psych Units?  Not regular Psych but Geriatric Psych?    We do have GeroPsych here, and sometimes when a Loved One, (LO) is so far over the moon in behaviors, the LO is admitted to GeoPsych on an involuntary 72 Hour Hold and usually that time is extended to more days.  Reason being, is that the patient can be evaluated on a 24 hour continuum and assessed for treatment needs; meds can be adjusted and assessed for effectiveness and any side effects.  It can be very helpful and also restores quality of life not only for the patient, but also for the poor beleagured family.

You have built a nice support unit and while that is helpful, it is certainly not everything and leaves a lot to be dealt with on that 24 hour basis; it can be exhausting and affect one's own health.   Have to say though; quite a few of our Members here do see a therapist; it helps to have your own private place to be heard and also to have support that can put us in  the direction for some ease.  If you can find someone you like with a good fit, it may well be worth a try.  Maybe family would stay with your husband while you go to your appointments; it would be your time for your inner self and may help with the stress.  Just an idea.

Please do come and talk as much as you wish and also; please feel free to rant away, we all do this at one time and another and this is a safe place to do so; we all undertand as we are all on or have been on the dementia journey and it is not a good place to have to be.
 

 We are all here in support of one another an that now includes you too!  I am sending warmest of thoughts your way,

 J.

Pmac012

Hi everyone. I’m new here and I come seeking other people going what I’m going through in the hopes of learning ways of coping with my situation of being the caregiver for my wife who will be 3 years removed from a disabling brain aneurysm. Just wanted to get my account set up tonight and say hi. I will return soon

AnnMB

We had a great day yesterday. DH was lucid so we planted cucumber seeds, wandered around the yard looking at the veggie boxes and talking. He had a nap and woke up just before son and grandson arrived to finish weed whacking the ditch. We went out to see daugther-in-law to order warm chocolate chip cookies when he goes to visit Wednesday night while I grocery shop. His sense of humour was such that we had several good laughs. Today he has been cranky as he has pain in his arm. The other pains he had have left as they are phantom pains. He has been asleep on the couch and is very dopey.  It could be an interesting day as the cleaners come and I need to get a few things where he can come with me.

The doctor told me to take him to emergency if I need a rest and admit him. Not happening unless absolutely necessary as he thinks the hospital is a prison. I had to take him when he had chest pains and left him over night so they could do blood work at 5 a.m. I had to rush in at 6 a.m. to calm him down as he turned aggressive and was wandering. It took 10 days to calm him down from that visit. If we mention we may have to take him to the hospital we always say it won't be to that one (though it will be) but the other one. That calms him down. Prior to Alzheimer, he hated to go to the hospital.

A lot of searching and there is Long Term Care in the hospital with one respite bed. I am sure if I had to put DH in if I was alone, he would go to the respite bed where he would be seen by one of the two doctors who take care of that ward. The nearest Geriatric Psych Unit is a 45 minute drive from us. We have to be referred to it and it is the only one in Nova Scotia.

I talked to Alzheimer Society Nova Scotia yesterday and the medication he is on is the basic one until you see the specialist (I got her title but didn't write it down). I'm joining a virtual support group (thanks Covid) and am taking a couple of courses on the next intake. A package of information will be sent to me also. The coordinator and I talked about what supports I have in place (she's amazed at what we have put together) and what legal items I have in place and how fast we did it. We talked about how I am doing and that she will check in with me again in a month or so but I can call anytime I want to.

On to today. I have to make breakfast and get a few things done before the cleaners arrive. Planting carrots may not happen unless he is alert and stable on his feet. A drive will be in order to get him away and hopefully I can get the things I need. If not, we try tomorrow or the next day.

MAlice

I am new to this.  My DH was diagnosed with dementia in Feb after memory tests and MRI.  He is only 57 and he does not really realize that he has it.  I do not know how he doesn't - no driving, doesn't work, etc.  They think it may be due to alcohol, although besides a couple heavier months of drinking last year (after his mom's death) he has always been a social drinker.  He does not understand he needs to stop drinking and our friends, and me at times, are enablers. I am drinking more because of the stress and knowing he probably will not work again and it is $$ in CA to live on one salary, etc.  He walks ten miles in our town everyday and does not get lost.  He can be sweet but can also get easily frustrated and yell, too.  His main problem right now seems to be time management.  He constantly has to ask when his appt, or when we are leaving, why am I mean, why we can't go out and watch a game at a Sports bar.  LOL 

Well, enough rambling.  Is there any drug that seems to be working for your LO?  I want to try anything ASAP to help delay the future or improve his now, if possible.

Thank you for listening.

AnnMB

MAlice wrote:

I am new to this.  My DH was diagnosed with dementia in Feb after memory tests and MRI.  He is only 57 and he does not really realize that he has it.  I do not know how he doesn't - no driving, doesn't work, etc.  They think it may be due to alcohol, although besides a couple heavier months of drinking last year (after his mom's death) he has always been a social drinker.  He does not understand he needs to stop drinking and our friends, and me at times, are enablers. I am drinking more because of the stress and knowing he probably will not work again and it is $$ in CA to live on one salary, etc.  He walks ten miles in our town everyday and does not get lost.  He can be sweet but can also get easily frustrated and yell, too.  His main problem right now seems to be time management.  He constantly has to ask when his appt, or when we are leaving, why am I mean, why we can't go out and watch a game at a Sports bar.  LOL 

Well, enough rambling.  Is there any drug that seems to be working for your LO?  I want to try anything ASAP to help delay the future or improve his now, if possible.

Thank you for listening.

First of all, welcome. The best way to get support is to start your own thread so people know you looking for support. People are here to help.

I'm not sure if you have a family doctor who is helping you or if your husband has been referred to a specialist. You need to get that in place as soon as possible. Our family doctor has referred DH to a specialist so he can be put on the proper medication. He is now on one that is given until the specialist sees him. The medication he will be put on could be different from what others are put on. It seems as if the doctors have to figure out what they need and how much.

I have found that if I don't want DH to have something I need to not have it. Ours is pop and potato chips. I don't smoke but DH does and that is something I'm slowly trying to get him to stop. Very hard to do as it is a soothing agent for him.

We all have to answer repetitive questions and I get what day is it, the time, the temperature, appointments, etc. I answer those honestly and some days many times. He will ask if he has watered the plants last night and sometimes when I answer honestly he gets mad. I send him out to water the plants. Who cares as long as he is happy. If you are going to sports bars and worried about $$, think of other ways you can enjoy sports at home. It all comes down to making a plan and thinking of ways you can implement it through diversion. I find this hard as I realize I am both a target and a trigger.

If you can talk to a therapist, I would suggest this. This disease progresses and there is no way to delay or improve the present or the future. It's a hard pill to swallow. I am thinking of talking to a therapist as I have some issues I need to vent to someone. Some things to look at are:

Get a team of doctors, friends, and family around you and your husband to help you.

Get your legal paper work in order. DH signed a POA which was wonderful but won't sign a Personal Care Directive or have a will. I have had to put in a lot of extra things in my will to make sure he is taken care of and a lot of money will be put into trust for that care. His POA allows a lot to be done. I know a POA in Canada is different than a POA in the US.

I hope others can help you about medical as it is different in Canada. We have medical and I have Green Shield which pays for most of our prescriptions and other items we need or will need.

Call the Alzheimer Society. They are there for you. I did this yesterday and I will be connecting through Zoom to a group to talk about issues. I've also signed up for 2 courses to take. One is Family Care Giver Theory and the other is You First Care Partners.

And remember to enjoy the good days and think about them on the bad days.