Stone walls do not a prison make, Nor iron bars a cage; Minds innocent and quiet take That for an hermitage; If I have freedom in my love, And in my soul am free, Angels alone that soar above Enjoy such liberty. Richard Lovelace 1618-1657
My name is George Streit.
I've enjoyed reading messages on this site for about a year and have never posted anything because I don't know if I have anything of value to offer. I'm a 90 year old caregiver for an 85 year old dear wife who was diagnosed with vascular dementia four years ago. I think if my dear wife was judged by alzheimer stages, she would be at about middle stage 6. We have been thru most of the bad experiences mentioned in these messages and I am continually amazed at the similarity. I get the idea that some of the caregivers here consider themselves prisoners of this terrible disease. The guy who wrote this poem was himself a prisoner but he never considerd himself as such. He wrote a wealth of beautiul poems while enjoying his life in prison and if you read his works you would agree. He was a happy guy! I'm asking myself. Can I be a happy guy? ....I'm trying.... After 66 years of marriage, my honey and I have lived life to the fullest. We did it all....Family, friends, fun....and now, memories; and none of that can be taken away from us by some dumb disease. Actually, we have a lot to be happy about! I did not choose to be a caregiver. I was chosen to be a caregiver....Why?.... I like to think I was chosen because I posses all the qualities to be an excellent caregiver. And with help and advise from this site, I think I have done just that. I have accepted the challenge. I have learned a lot. I can still make mistakes but I can forgive myself. I feel good about myself. What other usefull purpose could I serve at this stage of my life? I think attitude is so essential to happiness; and after all, happiness is the greatest gift that life has to offer. We cannot control many of the problens that we face in our lives but we can control our attitude.
I feel the sorrow and pain in the messages on this site. How I wish I could do something to help.
Welcome... I'm a young 83 and DH is almost 89. You have a very good attitude when It comes to this disease. I am still struggling with the "cheerful" attitude.
welcome George. your attitude is positive and you have surely done a great job caring for your wife. you are an inspiration to us younger caregivers who have also been at this for awhile. surely you have alot to contribute to the various topics.
I'm not sure I have all the qualities most desirable in a caregiver, but...well...they probably ran out of qualified candidates and had to start drafting a few from the B-list.
Welcome to you and congratulations on the ability to be a caregiver at age 90. I look after my 90 year old sister in assisted living and she in no way could be a caregiver. My husband was diagnosed recently with vascular dementia and I'm still trying to adjust to this. He is in early stages I guess some times better than others. We are both 78 years old. I'm learning so much from this board.
George--After reading for a year, I am glad you finally posted! You certainly do have something of value to offer. I think most of us struggled with the feeling of being held prisoner at the beginning of the illness--I would say that's even normal at that point. The hope is that gradually, over time, we will come to terms with it and make peace with our role, as you have clearly done. Please keep posting--we so need your point of view represented here.
Welcome George, I'm glad you joined in. I guess I sound a bit bitter sometimes. We are part of the early onset group. DH was dx last year at 60, I am 52. We still have a 15 year old DD at home. I still have to work outside the home, and my job future does not look good right now. Cutting hours again. I think if this had happened to us 20 years from now it would be a lot different. But you are right, we need to keep looking for the bright spot in the day. Right now for me my days are filled more with worry on how to make ends meet, than taking care of DH. He is able to do so much for himself right now and for that I feel very blessed.
Thank you for sharing, George. I remember that poem NOW that you've posted it. My 74 yr old hb has vascular dementia, also. Hope you'll continue to encourage us.
Welcome to my website. Since you have been reading for a year, I guess I don't have to tell you how helpful and supportive we are to one another.
Since I am 63 and EXHAUSTED both mentally, physically, and emotionally, I cannot imagine being 90 in the caregiver role, but you certainly are an inspiration, and we can learn a lot from you. You have a lot to contribute, so please write more often.
Also, log onto the home page - www.thealzheimerspouse.com - for new blogs, breaking news, resources, and information.
What a beautiful poem? Reading your comment just made my day. Please comment more often with your wisdom. You made me want to continue being a caregiver and not complain so much. Thank you.
Welcome, George. My wife, of 57+ years, is in late stage 6. I try to keep upbeat, but at times it is hard. But when I read here what some of the others are going through, I feel blessed that my wife is really easy to take care of. I don't deal with anger, rages, etc. She is incontinent of urine, but since she is a woman, I don't have to deal with her voiding all over the place.
Keep posting and remind us all of our blessings in this ordeal.
So glad you are here to encourage us, George. Don't know how we will be able to help you but just ask. This is truly a good bunch of people doing for others all the time. Selfless.
Hi George, I am so glad that you posted today, I am another B-lister! Whenever I read posts like your I say to myself, "there is my hero" someone to look to for strength and courage. The fact that you do sometimes makes mistakes and ready to admit it is another reason I feel that way. Please continue to do so and I hope that we can help you and have already helped you because that is what we are all here for. To help each other.
Hi George, I seldom post but read the board daily. I'm glad you decided to post. I love your attitude and the poem. I struggle every day with the trials we all have on this board. Thanks for lifting my spirt today with your beautiful post.
Hi George, Keep on reading and posting when you have the urge. You have a wonderful attitude and we could all use a dose of positive reinforcement. (((Hugs)))
Thank you George...I love your strength and attitude. Just reading your post is a big help and encouraging. Some days I will say or do something in anger over this terrible illness and later regret it....It's can be very lonely out there in the real world..it's nice to come here and not be alone.
Thank you George for sharing your poem and your thoughts. You have a wonderful attitude. Perhaps we are chosen for this role because of our strength, or because we are to become stronger. Stronger in our love, our spirit, patience, etc. My husband will be 70 this year. I will be 63. He is stage 6. I hope to learn much from you.
I have always loved that poem and believe me I have thought of it many times in my (now past) many years of caregiving. For the first time since I was three years old - I'm now almost 76- I am caring for no one, not my mother I'll with TB, nor HER mother, nor my three kids, nor my poor demented husband. There is an AFTER and though my mind has always flown free, now too my body can. Courage, my friends! And welcome, George!
....I want to thank all of you for saying nice things about me. I never realized I was that nice. I'm thinking I should provide a little information about my situation to show that except for my age, I am one of you.
....About 4 years ago, my dear wife, Helen, started having memory problems. An MRI scan showed evidence of numerous small strokes. She was diagnosed with vascular dementia and put on aricept 10mg. which she still takes. During the next year, her memory continued to deteriorate, had a small accident and quit driving, lost the ability to operate appliances and needed help with almost everything.
....In early 2009 I quit work so I could be with her full time. I have two daughters living nearby who are a big help. As her memory and cognition worsens, I am learning more about dementia and how to deal with it. This Site has been a great source of information.
....So, right now she is continent, but needs help finding the bathroom and toilet. Has had some accidents when I'm not paying attention as I should. I'm still learning. I must use extreme patience sometimes, to help her get dressed and undressed, to get her into the shower, to get her to take her pills, to get her to the doctor ect. Sometimes she is uncooperative and aggressive. Tried zyprexa (made it worse) Tried seroquel, even as little as 12.5mg. (put her to sleep). So what do I do for uncooperation and aggression? Back off, wait, try again. She has the uusual speech problems. The usual hallucinations and suspitions. The usual pacing and roaming. The usual bad things to say about her caregiver. The usual hiding things in unusual places. The usual shadowing. The usual wanting to go home when already home. She turns on water faucets and lites all over the house and never turns anything off.
....Now for the good stuff. She can feed herself and will say "Thank you honey" when I put food in front of her. She is friendly in bed. She loves a good hug.....fron anybody. She can comb her hair and apply lipstick. She is strong psyicaly and aside from the dementia is in good health. She dosen't really look like she's 85 years old. She loves to hold our little dog. She loves to go for a ride in the car. The uncooperation and aggression problem is getting better. I don't know if she's going thru stages or if I am learning how to deal with it.
....Last evening, at the kitchen sink, I was filling the doggie dish with dry dog food. I turned my back for an instant and heard a dry crunching sound. I turned around and saw that my dear Helen was eating the dog food right out of the doggie dish. I yelled at her and told her and told her and told her and after she finally realized what she was doing, she laughed and said "it isn't all that bad".... So naturally I had to try it myself....yuck.
.... I think that's where I am right now in my caregiving "it isn"t all that bad". I'm sure I wouldn't feel that way if I were 30 years younger. Being 90 and not much else to do makes a difference. Hang in there everybody. I'll be reading your messages and thinking of you.
George, your words just make me more patient in my caregiving. Your lovely wife is doing pretty well and I am sure it is because of the wonderful care you are giving her. We are all in this together. What one doesn't know, the other will and that is how we all get through this.
George, it sounds like you are doing all the right things. I don't know it this will help, but when my wife gets stubborn and refuses to do something I want her to do, such as get out of the car, I just walk away and leave her alone. I come back a few minutes later and she has forgotten that she was being stubborn and does what I want. I think she is trying to exert some control over her life. She is in late stage 6 - requires help with almost everything and is incontinent.
George - you are a delight! Such a good writer. Would you mind telling what your previous life was. A school teacher, maybe? Or perhaps a writer? Just curious and hope not too nosey. Your precious wife is lucky to have you - but I'll bet she knew that when times were better.
George--on your medication question--is your wife being seen by a specialist whose field is treating dementia patients? There are many other antipsychotic medications out there to try, but I think it's essential to have a doctor who is well versed in their use. As you have seen, some can actually make behaviors worse. I would speak with her doctor and see whether there's something else she can be given for the aggression. My husband has a history of being uncooperative and aggressive at times; it took a while for his doctor to devise the correct "cocktail" (now on a total of 6--yes, 6--different psych meds plus Namenda) and it is working.
George--Welcome. My DH, 68, tried Aricept--all it did was agravate the confusionn and agitation. He was never on Namenda. He was on 2 antipsychotics for over 18 years becaue of a Dx of Schizo-Affective Disorder (a mental Illness). When extended exposure to one of those meds triggered other problems, he required a significant med change. In the process of doing that, the Drs. decided to do neuro-psych testing to determine more precisely what was going on. That's when he was Dxd with Vascular Dementia. One med was changed easily, but we went through 3 before finding a dosage of Geodon that works for him. As time and his condition have progressed we have added other meds to help him operate on fairly even keel---not "doped up".
Also, don't be afraid of Blck Box warnings. When these drugs were tested, Senior Citizens and Dementia patients weren't included, so they have to say they can't claim the meds are safe for them. In my mind the slight increase in the chance of a heart attack or stroke is mote, knowing the diagnosis he has. A better quality of lieover the last 5 years is worth the risk.
.....I think I should respond once more to thank everyone for the advice on antipsychotic meds and to answer FLO39 who asked What I did in my previous life. No I was not a school teacher or a writer but I would love to have been a school teacher because I have always enjoyed teaching someone to do what I could do. Actually I spent my working life (70yrs) enjoying my favorite hoby; electricity. Always self employed. First as an electrical contractor and later specialized in machinery control. I'v built a lot of crazy electrical stuff. I like to think I'm a musician. Use the computer to write songs. Horn blower. Marching bands. ..... Now FLO39, you've given me an opportunity to talk about myself, which naturlly I like to do. I should also say that I'm a very slow typist and a terrible speller, so I use WOLF's suggestion and write this all into notepad and coppy paste to this site. That way, I can get everything reasonably correct and fool you into thinking I'm an intellectual. (while only a high school grad) This process, of course , takes more time, and that is why I don't post often. Caregiving must come first. .....Thanks to Joang for this site and to all of you who have a lot more to offer than I do.
I hope you continue to write here george, it helps to strengthen me, to realize how much I love my husband, and to be reminded that it is better to give than to receive. I know this, I just forgot.
I was born in March 1955, one day after the death of my husbands father, and my husband was 7 years old at the time.
We fell in love 10 years ago, got married. I often would say, "OH I was born the day after your Dad died, because God would know you needed someone to take care of you in your older years"
NEVER KNOWING HOW TRUE THAT WAS
Oh how I hope and pray that I can be that, and still have a life to enjoy.
And how I hope and pray at least occasional peace and happiness for all of us.
Coco--I, too, used to say something to my husband that came true...we are only 4 years apart but attended the same elementary school. I always told him, I wish he had found me there and I could have known him as a child. Now I am having that experience in some ways.
Welcome to you George. Your post truly humbles me. My husband is only 58 and has had symptoms for at least 7 years....and would probably be in stage 5-6 I sent my baby out the door to college 4 years ago and felt now it was my time to work more (for $$ that is)...when oops here comes my hb in the door. The point is I have many times of wah-wah why so young, why me, why now, but really is there any good time for this? Your grace at dealing with this at 90 makes me realize I have the strength now to deal with this....I may do it kicking and crying at times but only my attitude can destroy me. Every day I try to do something or see something positive. Yesterday when I drove my granddaughter to school we saw the sun rising in the east through the clouds, right in the Vee of the mountain valley....clouds and rain all around but one beautiful gap there to see the sunrise.
I'm back again.... I started this discussion about four months ago and added to it twice, so now that I find myself with a little time on my hands I thought I wouuld do it again. Each time I read here of another caregiver's experience, I gain a little knowledge and strength. Somehow, it really helps. So now I want to do my part and share my own experience. In the three and one half months since my last contribution to this discussion, (oct.11) my situation has changed considerably. About six months ago, when I couldn't get my Dear Helen to visit our primary care doctor any more, the doctor sent an RN (Bess) to our home to check on her. Bess came twice and made suggestions and said to call her for further assistance. In Oct. I had been having increasing problems with Helen's aggression and uncooperation. So on Oct.24th I gave Bess a call and explained my situation and asked for advice. She told me she would get back to me. I never heard from her again, but within one hour I got a call from VNA Hospice saying they wanted to come to the house for an evaluation. The evaluation was completed about 4pm that afternoon and at 8pm that evening, they came to our house again, and had a bunch of papers for me to sign. Praise The Lord...We were on hospice care...and all in one day...and all because of one phone call. The next day we were visited by our case manager nurse, our social adviser, our VNA doctor and they also delivered a bunch of medical supplies. To make a long story short, VNA Hospice kind of took over. An RN would come twice a week to evaluate Helen. An aid would come twice a week and give her a bath. If no BM in three days, I would call and a nurse would come and give her a suppository. The doctor would come if needed. They sent a shower chair, a flexible shower attachment, a wheelchair, depends, medications ect. and best of all, I had a hot line number to call 24\7 if needed. I was still her primary caregiver and I still had to get her in and out of bed, clothe her, feed her, and since she was getting more incontinent, I had the depends to change, and messes to clean up. To sum it up, the hospice service helped me a lot. They took a load off my mind and a load off my expences. I think Medicare pays for everything. Now if anybody remembers, I'm 90yrs old and not all that strong physically and I've had some harrowing times forcing my Helen up or down when she was really fighting me. A few minor scratches and bruises, but I had to think about what could happen. Also, my kids were worried about the situation. Of course I've been looking around at nursing homes in our area, and pretty much decided that when the time came I would choose Hillcrest Woods. ( I think I should explain that we live in a little town about 30 miles east of Los Angles called La Verne, and Hillcrest is a quite large retirement community run by the Church of the Bretheren in La Verne. Woods is a 79 bed nursing home and a part of Hillcrest, serving mostly dementia patients) Hillcrest Woods is only a ten minute drive from our house and I have two sisters living in the Hillcrest community. So, now all I have to do is make up my mind. After reading here about other caregivers facing the same decision, I never imagined that it would be a problem for me, but I was wrong. Big time wrong. I was lying awake at night wondering what it would be like if she was not next to me. What would it be like if I woke in the morning and she was not there? Strangely, I never thought about what it would be like for her. I was only thinking of myself. Then one day my sister called. She is 91yrs old. Her husband died about five years ago and she's been living alone in what seems like an almost empty house. We talked about her experience and she told me 'George, it just takes time'. I think she's right. On Jan.6, after making the addmissions arrangements, with the help of my two daughters, we got Dear Helen loaded into the car and drove her down there. As I already knew, you could'nt ask for a nicer place. She is still under hospice care. VNA Hospice has other patients there. I spend two hours with her every morning and two hours every evening. She does not even realize that anything has changed. She can still smile and seems to be content. They have adjusted her medication (seroquel, I think) and she seems much calmer now. As for me, at least now I have time to contribute here. Compared to most of you cargivers here, I am having an easy time of it rihgt now. I just have to get used to being alone. It just takes time! Best wishes, hopes, and hugs to all of you.........
George I found this for you: Who are happy? Those who see a blossoming world and give their blessing. Who are strong? Those who restrain their grief and teach it to smile. George-you are a blessing.
Geargestreit, its good to hear from you and that you are ok with your Dear wifes placement. it does take time to adjust to a quiet house and a loss of added caregiving duties. now try to use this time to do things that make you happy while advocating for your sweet wife. divvi
George - Thank you for bringing us up to date. I've been thinking about you and wondered how things were going. It seems you've made a very good decision for both you and your dear wife. Please keep posting so we'll know how you are.
George, I have read your post and you are an amazing person. The love and care you have for your dear wife is awsome. You are definitley a blessing here and yes you have lots and lot to offer. Please don't desert us when we have such a well of knowledge not only about Alzheimer's but of a life of love you and your dear wife have shared. Sixty six years is forever,,,,, My dh and I just celebrated our 36th year of marriage and that is a lifetime to us,,,, we are 56. I enjoy your post and your dedication,,,,,, thank you....
George, your post today was a big help to me as I am just moving into my second week alone. DH is at the Hospital where they are treating him for congestive heart failure in addition to changing his Psych Meds. When well enough he will be Placed, hopefully at my preferred choice of NH. After almost 38 years together(not as long as you) and almost 24 year of Caregiving the house is empty and my entire routine is gone. It will take time to adjust. I know. But it is good to be reminded as I find my way into new schedules and routines. Thank you.
And please do stay with us. We need every tip,, and supportive comment we can get as we travel this road.
Welcome. When the time is right consider doing what I was advised. Dress her in stretchy comfortable clothing and let her sleep in her clothes when the chore of dressing and undressing become too much along with everything else.
I resisted that for some time and was sorry I did. My wife was quite happy to sleep in her comfy clothes and every few days I would wrestle her into the shower and do her hair etc.
Don't forget that just a fifty years ago most people took a weekly bath and much before then the number of baths drops off sharply. Our idea that we must shower every morning is quite recent and arguments can be made that isn't that healthy either.
At any rate the advice helped me not fight her twice a day which got very frustrating at times.