Good morning! I am new to the message board so forgive me if I am not taking the right steps here! Recently my father, who will be 86, was placed in the Veteran's Home due to dementia. This illness is new to me and not very well understood, especially the fine line drawn between dementia and alzheimers. I am not familiar with "stages" of either diseases so any and all suggestions will truly be appreciated. Last weekend I visited my father, who still knows who we are but he has no clue of where he is, why he is there and why he cannot leave. His conversations and surroundings all take place elsewhere and a few decades back. The most upsetting experience I had from my visit with him Saturday was that I had asked the nurse to help distract him so that we could slide out and leave as he had asked several times to take him home. The nurse did not do this and as I was walking down the hall, almost to the exit, I heard my father calling my name out over and over. I caught a glimpse of him coming down the hall, in his wheelchair, calling my name. I had to pretend I did not hear him and kept on walking to the door (he is on a lock-down ward). This really bothered me and am having some difficulty dealign with this. Should I have just kept on walking or should I have gone back to him?

I'm sure there will be many better answers than mine but I will start. Welcome to the forum! In many situations you will encounter dealing with your father, or anyone with Dementia and Alzheimer's for that matter, there is not always going to be a clean cut right or wrong decision. You cannot live at the nursing home so there has to be a point when you leave. You did the right thing. Does it make you feel better? Absolutely not. In the future, I would make sure that nothing is bothering your father the reason he doesn't want you to leave. Is he hungry? Is he in pain? Is there something else he needs to tell you? When you are certain everything is okay with him you can either do like you did and slip out or let him know you have to get home to make dinner, do laundry, whatever. The chance that he will remember you walking out the last time you visited is slim. He will just be happy to see you again when you come the next day. If it becomes a persistent problem and you still don't feel better after awhile, try coming at times you can leave when he goes to the cafeteria for dinner or takes a bath, etc. No matter how you look at it, the adjustment period for you both to get used to him being in there will take a couple of months or so. Good luck and we are always here for you!

When I visit my dad, I always try to make a clean break when I leave. I tell him a little ahead of time that I need to get going here shortly and I normally try to get Dad into something he can do to take his mind off of me. LIke lunch. If I visit two hours before lunch, then he's ready to go and eat by the time I leave. I walk him to the dining hall and get him started talking with his friends. Hw always introduces me to them, and then I say my goodbyes. That might help for you.

Thanks so much for your reply, April O. The hard thing for my father is that he does not see himself in the VA Home. Actually on Saturday when I got there he was at some garage waiting for his car to get an oil change. Then five minutes into that he was with my mother and I having lunch at a restaurant, then he'd bounce back to the garage.

Just two weeks ago he looked at me and said "Becky, I don't know where I am but I know I am here to stay." So the "here and now" times are very, very far and few in between. What I find uncomfortable to do is having to sidetrack him when he says its time to go home; or like when he finished his lunch Saturday he looked at us and said okay, let's pay and head home. I know a time will come when he won't recognize us when we come to visit and getting up to say goodbye and leave will be easier (yeah, right). I can place myself into whatever timeframe and/or surroundings he is in and communicate with him while he is there before quickly moving onto something else but my mother is bound and determined to pound it into his head that what he is seeing, thinking, and doing are so totally not real. As I have tried to explain to her she is fighting a losing battle and he is going to see her as the one that is losing reality and not him. My mom would much rather just get up say goodbye and walk away rather than tell him some excuse as to why he can't go with us. And I'm sure that within minutes of my walking away from him while he hollered my name he totally forgot that I was even there; still it hurts. When your father speaks you stop and listen --- those days are slowly leaving!

Actually, your posting was perfect timing to my next reply. I live with Ruth in her house 24 / 7 and it is just the two of us so we can create any pretend "environment" we want. For the past few months I have been trying to correct her when she is wrong and let her know the reality of things. She gets stressed, agitated, and argues back. About a week ago, I decided to try a new tactic of just going along with whatever she says (to an extent of course). For example, last night she said we had to go to the bank in the morning because someone was taking her money. Instead of telling her we didn't need to go, her money was safe, I said, "You're right. We need to check on that right away. I'll call now and get an appointment." I then make a pretend call on the phone and set up an appointment for nine in the morning. She repeats it quite a few times but by bedtime, she is content and goes to sleep. This morning, she has no recollection of it of course. Look at some of the threads about leaving on here....some people have said some really good advice about "We'll go home when the water heater is fixed." or "When you get up in the morning, I'll be here with the car." Let your mother see this forum too. As long as he is content, it shouldn't matter if it's with reality or not. Let me hear how it is going!

Dear BinMaine: Welcome to the Caregiver's Forum. You are doing just fine in your posting and we are so glad you found us.

The first months are the most difficult as you are on a learning curve that must move very fast.

I would like to refer you to the Alzheimer's Online Library. Go back to the first page and scroll down; on the lower right side, you will see a link to the library.

There are many good articles you can enter the problem issue for; then there is the booklet, "Basics of Alzheimer's"; and, "Coach Broyles Playbook for Alzheimer's Caregivers." Both can be downloaded and printed off.

There is also a paper (not in the library) you can Google, "Understanding the Dementia Experience." By, Jennifer Ghent-Fuller. Just Google title/author and it will come up.

Also, you can go to http://www.alz.org/apps/findus.asp

This will help you find the nearest Alzheimer's Assn. nearest you. You can contact them for information and also can ask to speak to the social worker who can provide you with a list of support groups near you.

The best thing you can do is read, read, read. The more educational material you can get, the more it will help you.

If you have a thorny issue, you can go to another site here named, "Questions for the Care Consultant." A social worker will address your question(s) within 24 to 48 working hours. You can get some excellent input there.

It will take you awhile to learn to refocus or redirect your father when things get dicey, but you will do well with it. Sometimes when they get irritable, it is best not to addresss their words, but to validate their feelings, "Gosh, that doesn't sound comfortable, I'm sorry you feel that way." And then redirect or refocus. It is often helpful.

One thing an Alzheimer's Assn Social Worker taught me was the value of a "therapeutic fib" when things are dicey or need to get accomplished and you know there will be resistance. "When are we going home?" "Gosh, the water pipes burst and the cleanup and new plumbing is not finished yet." Etc.

Do come here often, we are here to support one another and for me, the wonderful people here have been such a blessing.

You are a loving and compassionate daughter and your parents are truly blessed to have you by their side.

Take good care. We look forward to having you amongst the group here.

Johanna C.
Peer Volunteer

Johanna C,

Good morning! I am overwhelmed at the warm replies that I have received in such a short period of time from joining this site.

I truly am speechless over the moral support I have been given. Speechless, me???? My dear husband would love for that to happen to him at times! Just kidding - but my personality is one that I do not "sugar coat" anything. I am a straight-forward, honest person. Unfortunately, being one not to "sugar coat" or hide my true feelings has resulted in friendships ending. I hope that does not happen here as the info/support I have from this site is exactly what I need right now.

My heartfelt thanks to everyone that I have heard from.

I hope and pray you all have a GREAT day!

It has been awhile since my last post. My father has been moved into the alzheimers ward at the VA Home since my last post. To me he seems to be progressing rapidly through the stages. My guess right now is that he is definitely stage 6 and possibly 7.

What tore my heart out this weekend was my brother who oversees the care of my mother had her placed into a "retirement villa" against her will. She told him that she would try it for 4-6 months and if she still wanted to be in her own home she was moving back and she does not want to hear another word from him or his wife about having her placed till her doctor has evaluated her and the results show that she needs assisted living.

To make an extremely long story short I have four older brothers; two of which live within 10 miles from our parents, one lives in So.Dakota and I live 2 hours away from our parents. The two living closest were given power of attorney and executor of the estate. The two are the coldest, most heartless human beings I have ever encountered.

Three years ago they had a "family" meeting and were screeching bloody murder and swearing like parrots to my parents telling them that they both had to be placed in homes. The language that my two brothers directed to my parents, that my mother was in tears the whole time. It sickened me so to hear my brothers yell and swear at our parents that I left saying that they were no brothers of mine talking to our parents like that. Absolutely no respect, no care, no concern, NOTHING. The boys and their wives were tired of putting their lives on hold for our parents. In all actually, my parents at that time may have had to call one of them to come and fix something at the house perhaps once a month.

My mother is forgetful; but who isn't in general at the age of 85? She does get more forgetful when under stress. And unfortunately, my father was her back bone. With him having been placed in the VA Home now close to 4 months she is totally defenseless.

I told Mom that if she decides to return home that she can get the First Alert system (or a similar one) and she can get a PCA to come into her house to help with the heavier housework, grocery shopping, and taking her to appointments. I use to do PCA work for a local midcoast agency and I know that these agencies are also in her area. With her being a medicare (or is it medicad recipient) the PCA expense would be minimal on a monthly basis. My husbands mother had a PCA that came to her home 3x a week for 2 hrs each time and after medicare did their payment she was billed $70/month. Pennies compared to the $2000/month for this retirement villa. Besides the savings in money my mother's desires and happiness would be priceless.

Why do guys have to be so heartless to their own parents in situations such as this? I don't mean to generalize all men as cold and heartless because I know first hand this is not so. But it is with two of my four brothers.

Wow, once I get started on this subject I could go on and on and on. I needed to vent and I thank you folks for allowing me to do so. It helps!

I think that your mom can get home health, what I think you mean by PCA, on Medicaide. I don't think that Medicare pays for that unless you are out of the hospital and you have a doctor's order. But I hear you. Home health has got to be cheaper than a retirement home, especially if you are paying out of pocket.

Honestly, I am always getting Medicare and Medicaid mixed up. I am not sure which coverage they have. This is private pay at the retirement villa. I wonder if it would work to her advantage if she obtained a doctor's order for home care. Will just have to sit back and see what she decides to do after her 4-6 month trial perid. She badly wants to remain at home until she absolutely can't and I truly do not blame her one bit.

Thanks for your reply! Have a great day!

Oh, my it has been quite a spell since I have posted anything to the message boards. But I need to clear my head ----
I have a two hour commute to visit with my father who is a resident in the VA Home. His alzeheimer's has rapidily progressed since February of this year. I have printed some literature from the Alzheimer's Association in regards to the different stages of this dreadful disease. I have found these extremely helpful.
The nurses on the alzheimer's ward where my father is have only heard of four stages (the alz assoc lists more) but they feel my father is progressing into the fourth stage. Me? I honestly don't know what stage I would place him in (but I fear it is that last stage).
For the past month he has been on foods that are pureed. He does not recognize me nor my mother (his wife of 62 yrs). He is wearing adult diapers and needs assistance when he knows he has to use the toilet. His conversations are filled with splurred speech, not being able to say the word he wants but will describe that words function to us in hopes that we know what he is talking about. He is 86 but is back to the days of when he was in his late twenties/thirties. We usually find him going around the ward in his wheelchair but for the past month on our visits I have found him in his bed sleeping. His bed is lowered in the lowest position to the floor that is possible and there are cushioned mats on both sides of his bed. Most times we do not wake him as we do not want to wake him up with total confusion. We simply lightly kiss him on the forehead, tell him we love him and leave. The nurses are having probs with him in keeping him quiet at night and his hollering is preventing other residents from getting to sleep. Is this indeed the final stage?

Only God knows how long He will keep my father in this stage or how much more going back in time will He have my father go before He brings dad home with Him. This is terrible to say but my mother and I pray nightly that God will bring him home soon.

My brothers refuse to go to visit with my father saying that he is not the father they know. True, he is not the father we grew up knowing. But regardless he is still and always will be our father. He is still the father that loved us unconditionally and was always there for us for the good times as well as the bad. Our father now needs us to love him unconditionally, to hold his hand through this horrible stage of life for it is just as scary to him as it is for us. I cannot understand how they can be so cold and heartless and stay away.

I was certainly hoping for a much better update... I am so sorry to hear your father has been progressing so quickly. I know how terribly difficult this is for you and your mother. ((((hugs))))

Thanks for the hugs, JAB! May I also add that each hug was needed!

My last post here was in July. It seems a lot longer then just a few months. My usual two-week day visit to see my father came and went all in 5 minutes. When my mother and I arrived at the VA Home he was receiving treatment for his COPD which is a daily procedure and has been for a few years. I approached my father and when I laid my hand on his shoulder and knelt down so that I was eye to eye with him (he is wheelchair bound when out of bed) he smiled and asked "How did you know I was here?" This he has asked me for the past two months at each visit. I don't know if he recognizes that I am his daughter or if he is thinking I am someone else. Anyway, I always reply that he can never hide from me. The nurse then informed my mother and I that he is stricken with double infection, lung and bladder. And that the strange piece to this for her is that he was not displaying any symptoms but the testings came back with extremely high levels of infection. This I don't understand --- if the levels of infection are high than why did they not pick up on any symptoms PRIOR to the infections getting so bad????

Within three minutes of our arrival Dad said he had to pee so the nurse found two aides to assist him. When they were down in his bathroom the aides placed him in bed. I walked into his room and asked if he was sleepy and he nodded no. I stood at the foot of his bed and noticed that my mother was staying just outside the door to his room. Strange, yes. I motioned for her to come in and she said no let him sleep. I told her that he was awake and for her to come sit beside his bed that I would remove the floor mats around his bed until we left so she could get up close. She flatly refused and said we should go and let him sleep. So, I kissed my father on his forehead and told him that I'd be back later and left. A very quick 5 minute visit and she only spoke once to him that it was windy and cold outside. I know that it upsets her when he doesn't recognize her but as I told her time and time again he will have times when he does but that he will always feel in his heart the deep love he has for her and he always knows that his wife's name is Rose he just may not always connect her physically with being Rose. Do I keep bringing her to see him knowing how upsetting it is for her? I don't want to abandon him there as he is still our father and her husband regardless but she is so frail do I push the mental stress onto her by going? I always ask if she wants to go see him and she always says yes. Oh, what to do...............

quote:

Do I keep bringing her to see him knowing how upsetting it is for her? I don't want to abandon him there as he is still our father and her husband regardless but she is so frail do I push the mental stress onto her by going? I always ask if she wants to go see him and she always says yes. Oh, what to do...............

This one's easy. Yes, you keep going. Keep offering to take her with you, and if she says yes, take her. If she says, not today, accept that answer too.

Don't suggest to her that she go in right up to him. She is a competent adult, right? If she wants to, she will. If she wants you to move pads on the floor so she can get close, she will tell you or ask you or an aide.

You don't need to indirectly pressure her by offering to move the pads, etc., when you already know she's not inclined to see him.

Don't take this the wrong way, but why do you think she needs you to "re-make" her decision about whether she should go with you or not to see her husband?

Some emotional journeys are traveled alone and the loss of a spouse to dementia is one of them for many people.

Sometimes the best we kids can do is to honor both parents' feelings and simply support them with quiet hugs, ruthlessly repressing our tendency to deal with our own helplessness by trying to push them to take (or not take) a particular action that we feel may be "better" for them.

I find your reply rather disturbing.

I do not force my mother into doing anything she does not want to.

As for my mother asking anyone to do anything for her --- she will not. I don't care who the person is or how simple the task may be; she will not ask anything of anyone. She has always been like that.

I only offered to move the pads on the floor because she thought he was sleeping and when I told then that he was awake and that is when I offered to move the pads. Perhaps I did not word myself correctly in my earlier post.

I don't see where you find that I am "remaking" her decisions. I would never, never push her into doing something she does not want to do.

I am so upset by your reply that I can't even finish saying what I'd like to right now.

B, my response is based on the part of your post that said "Do I keep bringing her to see him knowing how upsetting it is for her?"

She evidently wishes to go with you, since she continues to go. So if you decide on your own to stop bringing her because you feel it upsets her, to me that's the same as saying "I know what's best for you, Mom, and it isn't what you've been deciding on your own."

As I said earlier, no offense intended, I'm simply not clear as to why you feel a decision on your part is called for? (as you said "Oh, what to do.....")

I'm sure other posters will be along shortly and am sure that they'll have helpful input for you.

quote:

Originally posted by BinMaine:
I know that it upsets her when he doesn't recognize her but as I told her time and time again he will have times when he does but that he will always feel in his heart the deep love he has for her and he always knows that his wife's name is Rose he just may not always connect her physically with being Rose. Do I keep bringing her to see him knowing how upsetting it is for her? I don't want to abandon him there as he is still our father and her husband regardless but she is so frail do I push the mental stress onto her by going? I always ask if she wants to go see him and she always says yes. Oh, what to do...............

If I were in your shoes, I would continue on. As long as your Mom wishes to go see him, take her. But don't be surprised if she is upset when he is so unlike the strong, confident man that she has loved for so many years. Not everyone handles seeing a loved one so "sick"; not everyone has the emotional fortitude to go in that room and pretend like everything is OK when they most certainly know it isn't.

You have a great strength, and tremendous compassion for your Dad. Your continuing unconditional love for him is probably the greatest gift you can give him now. Just remember that your Mom will handle his disease in her own way.

Don't forget to support your Mom emotionally during this time. So often we get so involved in the mechanics of just going to visit our LO's (getting dressed & ready, getting in the car, driving there, finding a parking place) that we forget to make sure that Mom is ready to go on an emotional level. You said that she has been placed into a retirement villa by your brothers without much say in the matter. She is probably trying hard to adjust to her new life without her loving husband of 60+ years. Then when she goes to visit him... he doesn't even really recognize her. Her heart must be breaking. For the first time in their lives together, they are living apart, and he isn't there with her to share all of the new experiences at the villa. She might be depressed, or at the very least, very sad. She might also be really scared; at her age to have to learn all of the new rules and "expectations" at the villa (only widows sit at the tables by the windows in the dining hall... the front desk will sell you stamps, but you have to find the outgoing mail slot over by the library... She can't remember that the villa van goes to Wal-Mart on Wednesday and Target on Tuesday...) can seem overwhelming without the added stress of seeing your husband deteriorate.

I know it doesn't really answer the question you seem to be asking - but I think you already know that there isn't an easy answer to any of this. We all just keep trying to do our best, and put one foot in front of the other.

(((hugs))) Thim

God whispered in my father's ear September 21st at 8:17 p.m. to come home to him. When I received the call that it was crucial and if I wanted to say goodbye I best be on the road as I live 2 hours away but with my husband's "lead foot" we made it in 1 hr and 20 minutes. My father waited for me to get there and 8 mins later he went home.

I'm sorry to hear about your loss. Bless you and your family as you cope with the upcomeing days and weeks. You can know that he is once again whole and free of this horrible disease.