Seeking information.......

[Nik-key]

Hi, I posted on the old forum years ago.
My husband was diagnosed with AD in 04. He is at home with me, and I intend to keep him here forever if at all possible. My health is not the greatest, I have been disabled since 99. During this past year I have had numerous TIA (mini) strokes. I am sure the added stress is not helping, but I think we are finally getting to a good place.

We ( his doctors and I ) took him off all his medications, (aricept namenda)
about 8 months ago.......he has really improved. The medication had not helped his AD, but did give him stomach problems and mood swings. He seems to have leveled off now that he isn't on the medication.

I was wondering if anyone could share the best place to get more information to prepare me of what is to come. I have looked on sites here online, but I find the best place to learn, is from those who are/ or have been through it.
I know each person is different, but there must be guidelines somewhere.
(length of stages etc etc ) Thank you in advance for your help, Nikki

[Tootsie]

Hi Nikki and welcome back to the Alzheimer's Disease Forum. I've been here for over 10 years, and perhaps longer! I originally found the site, when I was looking for the drugs currently in use to help control behavior in A.D. patients. My mother had died years before, after developing AD, and my brother in law had been put in a nursing home and was being over medicated. I've stayed around to help others through the process.

There is no "timetable" for the progression of symptoms, and the "stages" may overlap a great deal. My mother had symptoms from several stages all at the same time. However, gradually, over time, more and more of the speech became so erratic that none of us could figure out what she meant. She was in our home for about a year. The decision to put her in a "residential care home" was made when my 4 teenage children stopped bringing their friends home. Gramma's behavior was unpredictable, her housecoat unbuttoned and perhaps body waste, neatly wrapped in toilet paper might be in the pockets.

The best places for information are a local branch of the Alzheimer's Association, or at least the one nearest to you. You can also find information from the Council on Aging or the social services of your local county. Some areas have United Way supported agencies that help you find nursing home placements. You do need to investigate your options in that regard, considering your own health, and whether at some point you will be faced with placing your husband immediately in an institution. If you fall and break a hip, who and where will he be cared for? There is also the possibility that his physical health will fail to the point where he requires 24 hour monitoring.

I am assuming that you have all the legal and medical paper work completed, so that you have financial control to purchase any services or care, he might need in your absence, or inability to continue to care for him. You also need to make sure that you use whatever resources available to lighten the work load for yourself. A housekeeper, respite care giver, temporary nursing home placement, all are reasonable options for the use of any money you have available. You will be able to care for him longer if you focus on your own health and happiness when your days become too burdensome.

If there are specific questions you have, I'll be glad to try and answer them, but there is simply no way to predict how quickly the condition will accelerate. For a while, we had a woman posting here who was in the early stages. However, I haven't seen anything from her in quite a while. Cheerio.

[Nik-key]

Tootsie, Thank you for your reply.

I do think I will be able to care for him forever, if not, then for the most part.
We are unique in that there is 35 years between us, so I am in a better position to care for him, then most wives who find themself in this perdicament.

I do have his POA for health and finacial, we took those steps when he was first diagnosed. My Dad recently died, and I didn't take it well it all. However my step children stepped up to the plate and finally saw that I couldn't keep doing this on my own. They now offer help. But for the most part, we are fine at home alone, we have always preferred it that way actually.

His speech and bodily functions are all still with him, we are blessed in that as well. He has had this for at least 10 years, it just took a long time for the syptoms to become bad enough for a name. He is still the man I married 22 years ago. Some days it is easier than others to find him, but he IS in there. His short term memory is just gone.

I guess I was looking for a bit of a more personal side of peoples experiences instead of reading all the texts facts and books. Thanks for your help, Nikki

[rumpled]

Do know that the stages can be unpredictable. While the lists seem to imply they will be in succession, in real life, they seem to be mixed and come and go.

While you are very fortunate in ways that your husband is progressing slowly, I saw my MIL progress swiftly and pass in about a year from diagnosis. Some to a lot of that was brought on by poor care and bad decisions about home care as my father in law was in denial and wanted to be in charge and do it all himself. She started by mixing night and day, then lost her ability to remember that she went to the toilet, then use the toilet... then ability to eat and remember much at all and died of pnuemonia from inhaling food. In the end, she was finally getting care but only in the last month and it was too little, too late. It was very sad and I miss her still.

[Tootsie]

Nikki, it sounds like you have a good situation that will enable you to care for your husband for a long time. There are a few things that you may already know, but I would like to share them with you anyway.

Music is processed in a different part of the brain than speech. Therefore, when you need to get something across to him, sing it. You'll be amazed at how much information you can get into a verse of "row, row, row your boat!" However, keep the message simple, and repetitive.

If you need to be away from him, for hours or a few days, have someone make a video that can be played when he becomes anxious or upset. Just say that you will be away for a while, but back with him soon. Such and such will be cooking, and making sure that you have your ......whatever.

If toileting is a problem, try to establish a routine. Perhaps a morning dose of a bulk producing laxative, a cup of a hot liquid, breakfast with roughage either fruit or cereal, and then sit him on the toilet.

When my Mom was reluctant to bathe, I'd make an appointment with the hairdresser. She had ALWAYS taken a bath before having her hair done and that habit was familiar and easy for me to use. I think her reluctance, was mainly because she couldn't remember how to get out of the bathtub. That sounds so weird to those who have never been exposed to the Alzheimer's patient.

It doesn't sound as if he's inclined to wander, but have his name in his shoes, and some kind of chime or alarm when any door outside is opened. My mother would open the front door and say, "my it's black out there." She never wandered but my 14 year old son was afraid that she would. He would pull a recliner over in front of the door and sleep in it so she couldn't get by without awakening him.

Even though you can handle things well now, please keep his children involved in some way. It is important for them to feel they are contributing. You might ask them to take him to the barbershop while you do something for yourself....have lunch with a friend, go for a walk, visit the library or go to a movie. It helps you keep perspective, and keep from becoming depressed and overwrought. With a history of TIA's, anything to keep the blood pressure stable will help.

Have you also taken care of all the legal decisions, if YOU begin to have cognitive failures after numerous TIA's? That sounds so cold and ominous, but it is another thing for you to consider. Cheerio.

[Nik-key]

Toosie and rumpled thank you very much for your replies. I am so sorry to hear about your mother in law rumpled, so tragic.

I don't think that is cold at all tootsie, one thing AD has taught me is this can happen to anyone at any time! So yes, I think I have covered just about every senerio that could happen. Better to be prepared I think.

My TIA's are due to my neurolgical condtions and have more to do with pain, than standard TIA's where people throw clots. So that is also good, in that I have not , nor do they expect me to have any sort "brain" problems from them. I tend to have partial paraylis for a short time then get better. I haven't had one in several months, I think the treatments are working, whew!

It's hard on his kids, they just hate seeing their hero this way. Lynn (my husband) is still a very intelligent man, but he does repeat himself all the time, and like I said, he has zero short term memory recall. Though I am very grateful he is indeed leveled off, and progressing slowly, I do find myself depressed, it is such a sad disease, I lose a bit of him every day.

So far, he still eats like a horse. Of course he forgets that he has eaten, so I have to fix a ton of healthy foods every day. He has sundowners as well, at first this was just horrible! He was so moody, hateful even, so unlike himself! Through trial and error a whole lot of love and patience we have worked out a nice routine that seems to be working.

I do hear you, and I know I do need breaks. The thing is, he is not bad enough yet to allow others to care for him. By that I mean, he is aware enough to know it would be a "baby sitter". I tried this just once, it was horrible for all involved! Since my dad passed last month, I have needed help,
such as having his kids their to keep an eye on him while we were at the service, and they have all been wonderful with offers of help. I am going to talk with them and see if perhaps they can take him to lunch or something on a weekend so I can have some me time.

His short term memory has been an issue for about 10 years, but since he was diagnosed in 04, he has zero recall. Over the past 4 years, it has been very hard, but like I said, i think we are finally at a place of peace. I am resolved to what is to come, but I feel strongly I will be able to keep him at home. He would just hate a nursing home, I think he would just give up. I have already talked to his kids, and we are all in agreement to keeping him home, with the aid of a nurse when that time comes.

Tootsie, that was a great idea about the video! His kids stayed here with him while I had to plan my Dads funeral, I left notes, but a video would have been much better! Will keep that in mind for next time. I have enrolled Lynn and I in the AD safe return program. I know I rambled a bit here, but good to find a place to chat. Thanks for all your help! Nikki

[rumpled]

My MIL started my repeating herself...
Music was very soothing to her - but since my FIL is deaf, he would forget to put on any music or any sounds at all for her and since she went blind, she was essentially trapped which we think made her mind go faster. FIL would have the TV on but no sound - just close-captioning and they would not speak to each other (he was mad at her for not making sense anymore... he really could not understand no matter how many brochures we brought or how the doctors explained).
Do not wait to long to bring in help - even outside help - so he adjusts. A routine as Toostie says is critical - all food, drink, exercise and bed times should be as close to the same time as possible. You need breaks to and it is nothing to feel guilty about as that is taking care of him! He does not think he needs a baby sitter... but if he is lucid enough, he needs to understand, he needs 24 hour help - perhaps a doctor could explain that.

[Tootsie]

Nikki, thank you for sharing so much of your story! Of all the situations I have been involved with over the years, yours is the most positive and realistic of all. I am grateful to know about the nature your TIA's as that was a source of great concern for me.

There is one other thing that might be useful in planning for the next stages. When my BIL could no longer stay in his own home, his companion of many years took Lego's to the nursing home. My BIL and another patient found great pleasure in constructing and building things with the Lego's. Ann would take them home again with her so that the staff did not have to worry about them falling on the floor, getting lost, etc. These were the larger ones, used by toddlers, so old and arthritic hands could manipulate them.

As an introduction to having a caregiver or respite person come to your home, you might try asking either his children or close friends to come, "for lunch." If he can handle simple card games, e.g. FISH, OLD MAID, or rummy, that might also offer some socialization. At some point, it will easier to have people come to your house, rather than taking him "out" for lunch. If this is a weekly thing, there could be times when you could leave for a few hours, while they are there. I know that is some nursing homes, they serve beer, pretzels and card games during the afternoons. It has been a very positive thing for the folks involved.

Keep in mind that you are more vulnerable as you continue your grieving process over the loss of your father. You are faced with the double whammy of grieving over your father's physical death, and the slower, constant process, of the death of the person you knew and loved, as your husband Lynn. Depression is part of that process. You might find the book by Dr. Elizabeth Kubler-Ross, "On Death and Dying," helpful. It's very slim, and easy reading, and describes the stages of grieving.

I try and check this site several times a week and may miss a day or 2 at a time. Let us know if we can help, listen, or just be here for you. Cheerio.

[Nik-key]

Tootsie and rumpled thank you very much for replies.....yes dealing with my Dad's death is indeed hard, and I haven't been able to post in awhile. His final service isn't until June 7th, so this is adding to the healing process.
Dad was Lynn's best friend...so this is even harder as he keeps asking where he is.......:(

Tootsie again thank you :) I too feel thought the road will be hard, it will be possible. Things are looking up on the home front. I have admitted I could use some breaks and was suprised how quick family jumped in to offer help.
I am sure some of this is due to my hysterics over the loss of Dad...but I think they are also in this for the long haul.

I'm not sure if I mentioned this, but my twin sister and her 2 kids have moved in with us after her divorce. We are of course extremely close and I love those kids like they were my own. So with them here, I often have little breaks every day. It amazes me just how much I needed them!!! Something as simple as going for a walk.....so refreshing!

Great idea about the legos! I use to love them too ..bet we could have alot of fun with those:) He is still very alert, he plays and wins checkers all the time!

I know I am not expressing it well, but he is at a stage where he loves being around family ...but only if I am here. Though he is very comfortable with my sister if I have to go to the doctors etc. It is the strangest thing, he wants me there all the time, but at the same time, is frustrated ...mad at me too.
Like if we go to a store, he will no longer walk beside me, so I feel the need to keep checking that he is behind me, this angers him...he says things like I'm not a baby stop checking on me! BUT, if I don't...he would wander, or take off . He is always about 10 paces behind me...just enough to make me nervous and worry all the time. If I stop ..he stops!! Reminds me of a stubborn child :p Such a catch 22

At the end of the day.........even a frsutrating one.......he STILL tells me how much he loves me. THAT alone makes it worth the effort. He may not be the same man I married, and certainly many things have changed. But, this dreadful disease hasn't taken away the I love you's............yet

Thanks again, Nikki

[Tootsie]

Nikki, I know what you mean about always having to be present. No matter what I suggested to my mother, she always asked if I was going, would be there, too, etc? It was at this point that I realized that she was not longer my "mother", but my child. She needed the reassurance of my presence in order to function in a social group.

I was able to leave her with my adolescent children, as long as I planned the hours, and the activities that they would do together, in our home. No doubt your husband is ambivalent about his dependence on you, on one level resenting the need for your constant attendance, but on another, desperately trying to hang on to the independence he has. I am glad that you have had such a wonderful response to your request for respite. It will nourish you in the difficutlt days ahead. Cheerio.

[Nik-key]

It wasn't much, but yesterday I went out by myself for the first time in 2years!!!! I just took a ride to the beach, sat and enjoyed the silence. I didn't know just how much I DID need it. When I got home, Lynn was all over me..and you guessed it ..mad at me too. Oh well, one more thing one needs to learn to adjust to.

You are right tootsie, that is one of the hardest things I am still trying to come to terms with. I try to joke it off with humor saying things like...well I always wanted a child, but this isn't what I had in mind......But, it is hard losing someone you always counted on, be it a parent or a spouse. It is hard to accept that though Lynn is still in there, still can express his love..for the most part, my "husband" is gone. I am more his caretaker than his wife now. *sigh

thank you for the support...hope you have a great week, Nikki

[Jo6]

Hello Nikki. Yes, I would say you needed the "me" time. Kikki, you are in a very hard place right now. I do so feel for you. If you can not take up the guilt it does get better . It's been a long time caring for MIL, but she has been so low so long I can not believe how she is still alive.

You are doing the right thing, taking a few min. for yourself. As he gets worse, you will need "your" time even more. I know people will say harsh things and it really does hurt, but try tuning them out. they have no idea how or even where you are in "in The Long Goodbye". ((I'm going to look this book up and see if I can get one.

I'm proud for you for taking some time to put your head back and listen to the"silence". I've had a hard time taking time for me. Even though MIL is in a NH now I still try to go as much as possible. Ken goes a lot and trys to get a little fluid in her. It's sad, but I think this is for K more than helping MIL. He does Not want to let her go although he knows it is coming, anytime.

You take care and keep taking care of Nikki as well as Lyn. Tootsie is a real gem, precious stone. she has "reminded" me many times, take care of your self too. Tootsie is a very caring person and it shines like a halo over her head!!

Take care all, Jo

[Tootsie]

Nikki, year ago I read a book by Anne Morrow Lindburgh (sp?) that addressed the issue of women needing time alone to replenish and nurture their spirit. When I read your post, it reminded me of that book. I'm not sure of the title but think it was something like, "Gift from the Sea." It is probably out of print but may be available in a library.

I am glad to hear that you are taking some time for yourself. You may need to learn to lie like a drunken sailor, to alleviate some of Lynns anger at your absence. That, for me, was one of the hardest things I had to learn to do....lie to my mother. It was just easier, as she could not understand any reasonable truthful explanation. Cheerio.

[Nik-key]

jo, I am soooo sorry to hear of what you and your family have been through, and are still facing. My thoughts will be with you. Such a tragic disease:(

I have found out what a gem tootsie is:) I will look the book up and see if I can find it. The water has always brought me peace, perhaps that is why I sought it out. To some such a simple thing taken for granted, but it was pure bliss to me! take care and have a safe happy weekend, Nikki

[Jo6]

thank you Nikki, but I'm not going through anything that the rest of you are going through already or soon will be. Yes, it is such a tragic disease. It would make me very happy to see some positive help just around the corner:)

It is also lonely.Sometimes it will push you right over the edge, even without warning. I come here and I want so despertly to have good news to share. It gets to rolling down this hill and there is no hope of seeing the light again, ever!
I'm sorry to be so negitive, My hope and prayers right now is that MIL is not in Pain. Ken does not want me to go with him to visit his Mom. I can understand this to a point, but I do not think it is healthy for me or him. I'm not sure why the change? He does things for me, trying to make my problems go away, but he knows it isn't going away.

Oh well, this could be some kind of news:D I may have to have surgery on several of my fingers and up my arm. He will have to explain this to me before he starts on this jounery. I have a very hard time doing anything. I am right handed, it is my right hand and arm that is causing the problem. Oh well, we shall get through this also.

Nikki, you are very kind to me and I appreciate this. Of course most members here in Alz. forum are very kind to me. I love you all, just as if you were my family.
All my love and prayers for you all as well as your LO. Jo