Hi. I was in the chat room a couple of nights ago but I'm still new to all of this. My husband was diagnosed about two years ago with early onset AD. He's now 62. I'm 53. We're only married 12 years and I have no children (he has two grown children). I have worked full time all my life up until this year. My husband hasn't worked at all for over four years because of the AD. We're not in a position for me to retire at this time. My dad, who is 89 and lives in a neighboring state 3 hours away became ill early this year and I started to work a four day week mid year so that I could visit him and spend 3-day weekends with him to keep him company and cook some meals to store in his freezer. About a month ago I had to take a leave of absence as dad's illness became more advanced, and he finally passed away just three weeks ago. Though he lived a long life, and I should be happy that he's somewhere up above with my mom, I miss him terribly as he was just about my best friend and confident. I was always able to discuss my husband's AD with him, and from time to time, he had some good suggestions. He was my strength in helping me deal with this wicked Alzheimer's Disease.

I'm still on my leave of absence for a short while longer but am now very concerned about going back to work as I can see first hand just how my husband is most recently spending his days. He has gotten a lot worse this year although he's still OK physically. He used to spend lots of time playing solitaire on the computer and watching sports or movies on TV. However now he doesn't seem to want to do either. He's still OK to drive (he stays very local) and often just takes the car around the block for a drive. Some mornings, before I've even gotten out of the shower or finished my cup of coffee, he's been out 4-5 times just going around the block or to the corner and back. He say's it makes him feel better.

He wants to be with me all the time. Twice this past week I ran out quickly to go to the grocery store, and found him standing behind me. He got bored at home and decided to come out and find me. He says that he just wants to be with me all the time.

Although that's really very sweet, sometimes I need to do a few things on my own. He wants to come shopping with me, but then has no patience in the stores and often gets angry with me or yells at me in the aisles - over really nothing at all. One day he came with me to the Hallmark store. He stopped at the birthday cards and was going to pick out a card for him upcoming birthday in January. I smiled and said, dear, I'll get you a card for your birthday. Well, this just set him off and I finally just left.

Even at home, he needs me to be in the same room with him. I can't lay down if I'm feeling ill or work on my computer...about every 15 minutes he comes in to ask when I'm joining him. Sometimes I need to write reports for work. It's not pleasant when I respond that I won't be joining him for a while.

I'm trying to cope with the death of my dad as best I can and be as kind and understanding as I can with my husband, but my patience is wearing thin. I keep myself in control and never yell back because I know he can't control himself.

Does anyone have any ideas on how to deal with some of these behaviours. I'm reading all the books but I'm still lost.

Teree

Teree,
I am so sorry for the loss of your father. This is indeed a difficult time for you.

We are in such similar situations.
I lost my dad last April to Alzheimers, and my dear wife also has it. While she truly wants to be helpful and supportive of me it can be very trying.

It is very difficult to know how to help you with your work situation. In my case I have been working with my employer to be able to do more work from home. In fact I will likely be going to part time work soon since Karol needs me here more.

Anohter option is to get someone to come in at least for a while during the day. Have you checked with your local council on aging? They might be of help, or can give you good referals.

Thanks James for your suggestions. I am so sorry for the loss of your dad. He had Alzheimer's also? That must have really been tough, having two family members with it at the same time. My dad did not have AD but died from congestive heart failure caused by an infection he got while in the hospital for ulcers. Can you believe it?

Anyway, regarding your suggestions, I am working on getting a graduate student from the local university to take my husband to some sports related events during the day...maybe hockey practices or something. And I've also contacted his brother to come spend more time with him. But the day is L-O-N-G and a couple of hours a few days a week isn't enough. I wish I could get him interested in something...puzzles, video games, anything he can do on his own. Even when I'm home, I can't possibly entertain him all day long. Just today, we went out for breakfast, lunch and dinner...I just had a soda for dinner because I was so full. He just needs to get out of the house it seems! In addition, he took about 10 spins around the block. He constantly asks me, what are we going to do now? To tell you the truth, I'd just like to stay home and pay some bills!

Another thing I'm seeing is constant eating. He is always in the regrigerator, soda, ice cream, yogurt, left over salad, anything and everything. I really think he's just bored, not hungry.

I know I'm venting but I really do need to find something to help him pass the hours or we'll both soon be rolly pollys!

Teree

First, I am so sorry for the loss of your dad. I know you must miss him terribly.

Is your husband on any meds for agitation? If not, I think that would help a lot. Have you thought about adult daycare? Many people have great luck with that.

Teree,

I am so sorry to hear about your Dad-- it is so hard to lose the one who was our everything. My Dad passed away in Oct from AD. He was my everything- he just knew how to handle any situation. When I walked in he would look at me and say- what's wrong- he somehow just knew.

Dad used to shadow my Mom. She had no privacy- could not even go to the bathroom without him calling for her.

This is such a hard, hard disease. One thing for certain is.... change. Try to find the humour in things or you will go crazy. As Dad got worse and I realized I could not change him but I could change me- and I learned to just go with the flow and live in his world, it did seem easier.

I'm sorry you are on this journey with us-- but you will find a lot of ideas and support with your new alzheimers family.

I'll be praying for you.....Christy

TCL,,,I'm so sorry to read about all of your troubles...how very sad about the loss of your best pal,,Dad. My deepest sympathy to you.

As for your hubby,,is he on any medication at all? I hear your need for "downtime",,just to do work.

If I may gently suggest to you,,please get with a good Eldercare attorney right away,,and take care of business,,such as he will instruct you the ins and outs of things. First and foremost,,you will be able to keep your home when your husband has to be placed.

Next,,place your husband in ALF,,,he would be around other people with activities and socializing,,and trained staff,,and structure.

You could visit with him often,,daily,,and take him out for dinner. But as you well know,,as this disease advances,,it will cut your life right out,,and you can't have that.

You're too young to no longer work,,and as your husband gets worse,,how long do you think that your employer will be understanding of your problem?

I'm not trying to be mean,,I'm simply letting you know something,,that you already know. Since bringing Mom here to live with us,,I can't work,,but yet,,,I have to get back to work soon,,because of finances here on the homefront.

I honestly hate this damned illness,,I know exactly how you feel,,,and I know just from my own personal experience that the truth of that matter is,,no matter what we do,,or dont'do,,,it sucks. Peace

Thanks everyone for your thoughts. The doctor perscribed a low dose of Trazodone about a month ago for my husband's agitation in the evenings. I was giving it to him for about a week but then stopped because if I sit in the room with him to watch TV there really no problem, until he wants to go to bed before me. Then he gets really angry and yells at me, sometimes in my face. He'll sometimes say, "I just need someone to come sleep in bed with me" and I usually give in and go up to bed.

I was planning on calling the doctor on Tuesday and ask if this medication is also good for the constant pacing and lack of attentiveness.

Is anyone else familiar with Trazodone?

Teree

Trazodone is for depression. It can actually cause agitation and anger. Ask the doctor about medication prescribed directly for agitiation such as Buspar. Do keep in mind that it usually takes from 2 to 6 weeks for meds such as these to take full effect.

As for the medication suggestions, make sure you let the doctor know of ALL of his behaviors, not just the most obvious. He may need a combination therapy.
Perhaps you would consider "weaning" Hubby away from you within the house by having someone come in and spend time with both of you at first, working toward them spending time with Hubby alone.

Thanks so much for all of your ideas. I think my husband is not advanced enough to consider having him LIVE in any type of facility at this time. I'd like him at home for as long as it's possible for me to care for him and for both of us to be safe. I've seen some of those facilities and "I" wouldn't want to be there. Just to think of never being in my own kitchen, sitting in my own lounge chair, playing with my dog! I know at some point I probably won't have a choice because my husband will need more care then I may be able to provide. But I'm determined to try and do what I can to keep him in our house for as long as I can. I just need some help along the way!!!

Teree

I can understand a little how you feel. Can anyone understand it all... I have children at home which has been helpful because he would rather ask my daughter, who is 9, how to use the remote than me. We have been together about 9 years but married about 7. He isn't near sick enough to go into a home or have someone come here. There are days that you hardly know he is sick and others that it is obvious. The illness in our case has caused him to pull away from me not want to be closer. He doesn't act like he trusts me and there is a lot of tension between us. My husband also likes to drive and shop. At times we have enough toilet paper for the neighborhood. My advice is to do the best you do one day at a time. Keep yourself healthy. All I hear is how to take care of the person with AD and I have vowed I will do that but I can't end my life to do it. It isn't healthy for anyone to give up everything you enjoy. Maybe I'm selfish but I take anti-depressants, pain pills for my back, and know all of our mental health is important.

TCL, my heart goes out to you. I don't really have any suggestions that haven't been made, but I'd like to re-suggest Adult Day Care. That would give you time every day and give him something to do in a controlled environment. I also like your idea of a grad student taking him out to practices, etc.

I lost my father about a year and a half ago. That was when we discovered my mom has AD. From the day he died I was focused on my mother's needs. It was a long time before I had a chance to even process that he was gone and to grieve a little bit for him. I know it is hard for you to grieve for your father when you have such immediate needs with your husband. Also, in better times I'm sure your husband would have been a loving support for you in the loss of your father. It all hurts. But you will make it through. Coming her has been a lifesaver for me. I hope it will be for you also.

I pray that you'll be able to find a solution that works for you.

Tammi,

Your comment about the toilet paper made me chuckle. My husband's shopping habits change often. A couple of weeks ago, he kept going to the store to buy fruit. This lasted for a few weeks. I had bushells of fruit which I had to finally bring to work and give away. I had the most apples...I'm sure I had at least three dozen apples at one point. One day shortly after one of his fruit shopping sprees, we went to the local supermarket. He picked up a red delicious apple and said to me, "Should I get some." I said no dear, not for me, but get some for yourself if you want. He replied, "No, I really don't like apples!" I had to hold in my laughter over that one. Now he's purchasing yogurt...at least yogurt lasts a little longer.

My real concern has been over his going to the bank. At times he goes several times in one day and mmakes several withdrawals. I finaly had to open a second account just for him, in which I keep just a small amount of money...when it runs low, I transfer more into his account. This way, he still feels like he's in control and can withdraw from the bank when he needs to, but doesn't realize that there are other accounts he has no access to.

I really hate doing all of this, sneaking around and all...but I can't start bouncing checks all over town. You have to be creative and come up with new ways to solve problems every day!

Thanks so much all for all your input. It's nice to know I'm not alone.

Sylvia,

I've looked at adult day care in my area but the people there are so much more involved than my husband. Some of them are playing table games...that's OK. Others are sleeping in lounge chairs... that's just depressing. There are no windows with views like in our house...and no puppy dog (actually our dog is 8 but I call her a puppy). I'll continue to look around for more enticing environments.

TCL, I don't have any useful help for you; just, I'm sorry you lost your Dad, at a time when you especially could use him; and then ofcourse, your husband might be a person you'd turn to for help, but he's not really what he was for you, either. I'm thinking of you, and I hope you find solutions that work for you.

Have you thought about a male companion--someone around his age (there are retired people who are bored or looking for a little income who may enjoy spending a few hours a day with your hubby) They could go to lunch together and maybe find some outdoor activities--fishing, hiking, gardening--"guy" things. I hired a companion for my mom with AD after my dad died and it has been a blessing. The companion takes her to exercise classes (for her age group),lunch, and the beauty shop. She isn't with her all day, but long enough to tire her out. She isn't so lonely and isn't so demanding with my time. Just a thought

TCL, I understand what you mean. That's why my son with CP is still at home all day. We haven't found a program that is suited for him - yet. I haven't given up hope. I liked FMP's idea of an older man companion. Keep thinking and we will,too. There IS an answer. Perhaps together we can find it.

TCL:

Christy has the right idea. You've got to learn to go with the flow. Life is going to be different and difficult as a care-giver. But it doesn't mean life has to suck. With a positive attitude, things can work out. You can take control. But your husband can't. He clings to you because he needs you. My Jeanne needs me. But in so many ways I need her, too. Isn't it nice when a husband and wife need each other? Usually makes for a good relationship. --Jim

Jim,

I appreciate your comments and have enjoyed reading all of your posts regarding your relationship with your lovely wife. They are all quite touching.

But I'm not feeling that way right now. I try to be understanding and helpful, but most times I'm just yelled at or my husband will roll his eyes at me. Just today, I politely asked him not to do something while in the kitchen (which I felt was pretty unsanitory...its not that gross just unsanitary). Anyway, he picked up a box of crackers and made like he was going to throw it at me, then at the floor, but did't do either. It's so hard to remain loving with this kind of ranting and raving. It just takes all of the wind out of my sails. I'm preparing a very nice New Years Day dinner today for his two grown children and his brother...and I've spent the day in the kitchen. I've tried to keep him occupied with rented movies and computer games...plus helping me cut the string beans, etc. But to be yelled at all the time, when I'm trying my best to do something nice for him and HIS family...well, sometimes it just more than I can take. How do I take control??? How do I keep a positive attitude???

quote:

Originally posted by TCL:
...How do I take control??? How do I keep a positive attitude???

TCL,
Now we are into the area of philosophy....Oh My.
It is very difficult to know how to maintain control and sanity in the midst of all of this. So much of the time it can feel like we are just playing catch-up with each new symptom.

I will share with you a bit of how I cope and what I believe for whatever it is worth.

Most important is to seperate the disease from the person. We refer to the disease as AL Ziemer. (see my signature for how we feel about him)

First: Remind yourself that your ARE in control. Even when you don't feel like you are - you are. You have to be because he cannot be.

Second: Remember that you are the most important thing in this persons life. Their last connection to any sort of reality. When he asks what are we going to do next, he is clinging to you for that stability. Karol does the same.

Third: Try as much as possible to keep them involved in real activities. When I pay bills Karol seals and stamps the envelopes - I wash she dries and puts away (mostly) - We cook together, with my lead - she sets the table - etc. It's different with each person but you likely know best what will work. Will he sweep? do dishes? vacuum? etc. These jobs can be done repetively since he won't remember doing them before. Others here have suggested rolling coins.

Fourth: Use calming speech. Soft but firm tones get better responses. It may be different in your case because of the difference in Man - Woman dynamics and his need for control, but it works for us and keeps the stress levels lower than they would be. Sometimes it is a question of learning to control them without seeming to.

Fifth: Use humor. Laugh a lot with him. This is one of the best things in our bag of tricks. Nothing makes me happier than to make her laugh and it really helps her too.

Sixth: Hold him and tell him often that he is your love, the most important person in the world to you. This is critical to him because he needs to be constantly reminded that you are going to be there for him and he can continue to count on that. Fear of abandonment is very real in AD patients.

It is a dark and winding road we are on. One full of pitfalls and hidden dangers. The most important thing is to make our LO's remaining years as joyful and safe as possible.

One more point. As time goes on you'll learn to judge what things you can take on and what things will have to be dispensed with (like entertaining). I hope his family will be of help to you in this.

At least that is my take on the whole thing.
You are doing very well, asking the right questions and doing the research you need. YOur husband is a very lucky man. I share your desire to keep our LO's with us. It is a laudable goal.

Be at Peace

Wow, James thanks for the great advice. I too, have a spouse with AD and am always interested in how other people deal with this. I feel so unprepared and this is so new to me. I really enjoyed reading your post and your positive slant on this treacherouos path we are travelling.

TCL, I am very sorry for the loss of your father and that you are going thru so much at one time. I like how honestly you talk about what you are experiencing.