In responding to Divvi under a different discussion, I thought that maybe this subject should have its own title....
Divvi, you are right. We need to do the 7 stages of caregiving! I am going to write the basics of those stages. Everyone, please add to each stage for us all........(I may have gotten some of them wrong...correct me, please!)
1. Realizing that your spouse isn't acting and reacting to things the way that they always have. Watching those changes and trying to discuss the changes with them. Finding out that they don't see those changes even when they have been pointed out to them. Sometimes they seem like a different person and you wonder if something is wrong with your marriage.
2. Making notes of the changes in personality, memory loss, verbal response loss, other symptoms and other physical problems your spouse may have and watching your spouse more closely to try and figure out what could be wrong. Seeing them hide things and change their eating habits. Seeing them get frustrated without their knowing why. Noticing that their visual perception is off.
3. Researching on the web to see what these symptoms mean. Calling the doctor's office and making the "annual checkup" appointment and going with your spouse. (Sometimes it takes several appointments and tests to get a diagnosis.) Trying to maintain a normal lifestyle when this stranger is living with you. Your loved one occasionally returns to be with you for short periods of time.
4. At spouse's stage 4, you know what is wrong with your spouse and you start trying to make certain that your spouse gets the correct diagnosis. At this point, spouses sometimes get fired, or have fender benders, or take the wrong way to the store, and other similar occurrences. You know that you have to make certain that you have the legal and financial documents in place while your spouse can still sign.
5. You realize that you have to take over the full responsibility for everything, including your well being, his/her well being, the houses, the cars, the purchases, the repairs, etc. You wonder if you are up to it. You do the math and realize what you can afford to do and what you can't. You start researching alternatives for their care in case something happens to you. You begin mourning the loss of your spouse and your marriage.
6. As your spouse loses abilities, you pick them up and add them to your load. As you see that he/she can no longer stay alone, you make the necessary arrangements. You mourn more. If you are one of the more fortunate caregivers, you have discovered this site and know that you are not alone and get help from others who have answers that you didn't even know the question for. You shift your priorities, change what is important to what is vital.
7. As your spouse reaches stage 7, you realize that the person you have loved and cared for is at the end of his/her road, and you mourn even more for your loss. Realizing that he/she is on their way to a better place, you miss them even though the body hasn't given up the fight. You try not to feel guilty. You try not to second guess yourself. You need to know that you have done everything in your power to give them all of the love and care that they needed and you have received their love and gratitude (though most can't express it) for taking such good care of them. You need to make certain that you take good care of yourself while dealing with this long goodbye.
CommentAuthorSunshyne CommentTime1 hour ago This is great, Mary! I need to take some time to think about it.
But one thing that struck me right away was #3. I never did any research on the web to see what my husband's symptoms might mean. (This belongs in Ripley's Believe It or Not!)
Mary that is such good work! i would only add that maybe after Diagnosis "you lose contact with personal friends, your own interests, and see much less of family due to the stress of the illness and their lack of information -divvi way to go!!
Numbers 5 and 6. Those are the biggies right now. You did a wonderful job, Mary. I can't think of anything else to add right now. Maybe after I've had a while to digest all of it and perhaps read it again. Two thumbs up!!! :)_
its so true= i think knowing almost all caregivers are going thru the same stress and fustrations during the caring phase of AD- helps keep us grounded and better able to stay emotionally stable/ divvi
How about adding something about the immense loneliness of the caregiver around stage 5. Our friends and family know the diagnosis and are caring, but THEY DO NOT GET IT. I am thankful today for all the people here who do get it.
I'm going to ditto the isolation. At your number 3 or number 4 you begin to notice that you are socializing less, and that your LO is acting strage during the socialization. By number 4 or 5, you can't remember the last time you went out with another couple.
Thank you for writing this. I go to a support group and read this site, but nothing can make up for the sadness that I feel for my wife. Someday the loneliness/isolation will end for me, but the hell that she is going through I would not wish visited upon anyone.
I do not thing our spouses with AD experience the isolation that we do. I have asked my DH what he feels and he says he does not feel any different than before. So, maybe, for them the saving grace is they do not feel the loneliness/isolation that we do
Like Maryd, I also asked DH how he feels. Without hesitation he responds "I feel great. Never better. I think I'm in better shape than most men my age." (he's 82-1/2). In fact, he tells me he thinks he's in better shape than I am. grrr. My brother (age 76) came for Thanksgiving dinner today. I haven't seen him since last January. I was very sad to see how crippled he is with rhumatoid arthritis. It's just awful for him. DH asked me what was the matter with him. I told him he had RA. He didn't know what that was or why he should be so crippled.
Ditto the isolation. We lost contact with alot of friends as Claude didn't want "strangers" in the house. He is pretty much out of that phase now, but it is hard to reconnect with friends after such a long time.
Isolation is a biggie for most of us. Other then at Sunday Church we have virtually zero contact with anyone other than our kids and families. We are so thankful to have them close by.
I agree that our spouses don't necesssarily feel the isolation that we feel, and they don't feel pain from the AZ. My husband, indeed, having discovered TV (first time in our 52-year marriage that he really asks/expects to watch something) is really delighted with life most of the time. Marx Brothers in the morning, Mozart in the afternoon; I'm scurrying around finding new things for him to watch because he DOES remember what he's seen.
But hearing him describe what he's seen to our daughter is hysterical: the inner-city Irish step-dancers from this morning's Today show are going to the White House but they're somehow also participants in Coconuts (Marx Brothers, 1929, watching currently) and involved with the road race being sponsored by the church down the street. I'm just waiting for him to tie in the squirrels who are happily dismantling our pumpkins on the front porch!! He does forget a lot of words, and that's frustrating for him. BUt it's really aphasia - he knows what he's trying to say, even if it doesn't make sense!
Isolation here too. It doesn't seem that DH dwells on limitations or acknowledges that he has any. I try to keep things on even keel but inside I feel lost and trapped. Most of the time I can manage to, 'grow where I'm planted, make lemonade from lemons, realize it could be worse, find those little sparkles of sunshine, and such. Thankfully, most of the time I can do it. Nuff said. This list is very much the way it has been for me. Thanks, Mary.
Judy, yeah, you said it. I'm working on many of the same things. Keeping things calm. Trying to notice the blessings and joys in my life.
My husband's aphasia continues to get worse almost every day. Today he asked if we were going to do an errand I'd arranged for last night. If I hadn't known he wanted to go and have the clasp on his good watch fixed, I wouldn't have had a clue as to what he wanted to say. I'm good at guessing, but a lot of the time, I just can't get a handle on a lot of it.
There is a good chance I won't be able to get it fixed today. The maker of the watch won't sell parts. If it is just a pin, that they can deal with. If he lost an actual part, I'm mostly out of luck. I did locate ONE jeweler on line who works on that brand of watches. They have a phone number so I can call them before I send the watch out. They will quote before they start working on it, but it is such a minor thing...
I don't know what number this goes under, but once I realized there really was something wrong with my husband, he wasn't just carelessly forgetting to give me phone messages or purposely pretending not to comprehend the obvious, I switched from frustration to patience. Often not an easy task.
Along with the lack of socializing, the alienation of the family members who have not seen the same thing and thinks you are making it up. That was the hardest for me to deal with.
sandy D. With me too. While my kids believed me, until you actually see it in person, you have trouble accepting how bad it really is. When my Mother was in the last stages of old age decline/dementia she lived with me and for 3 months we could barely keep her in bed night and day. She had super strength even though she was 93. I even tired her down most nights and that was even difficult to do. One night when she showed signs of having a bad night one daughter and son in law, slept over and took the TV monitor in their room and I was to let them handle things. Nothing happened, she slept like a baby.
I felt like a fool. From then on I dealt with her myself during the night. The Ativan and Haloden didn't seem to have much effect calming her down. I had to give extra on one and eliminated the other and I can't remember which one it was. The one I rubbed on her forearm worked best.
DH has not had to have something to calm him ...yet.
Ya' know, I didn't realize how isolated I really was until the last couple of weeks. I had Thanksgiving Dinner. Had 3 grandkids here at 10a.m. to help me. They did such a good job. I found myself sitting down, drinking tea with them and talking (chattering) like a mad woman. I recognized what I was doing and stopped it. Today, I went shoe shopping with the girls. I had so much fun They both got new shoes--really nice ones. Cute. You may remember that I don't drive anymore so they hauled me all around town to do errands before the shoe store. It was such a delightful day. But, I find I'm talking waaaaay too much. I have to stop that. I sure don't want to become a bore. But I do think it's a sign of isolation. I've got to figure out something else to amend that. Anyone have any ideas?
Yes, my people skills have gone way downhill the last year or two; I've forgotten how to talk around non-AD people. And then I talk and talk and talk... I was thinking a button in my mouth to occupy my tongue would remind me to stop? (saw it on a television show years ago). While on the phone, I write on a notepad in front of me, "QUIET" or "LESS WORDS". That helps... Hope there's more ideas...
I either talk too much or don't talk at all. After the isolation I am sometimes like a young mother, can only talk about her kids. Not many people want to hear about the recent events of a AD spouse the same as they get tired of hearing about your children and grandchildren. And politics and the economy are hard subjects to deal with.
I don't have any answers. I think for myself, getting involved in a volunteer job dealing with people would be a good outlet. (NOT people who are angry or agressive but people who are enjoying the day and happy.) Being around happy and interesting people rubs off on others around them. At this time I am unable to do that, but I will keep that on the back burner.....
This Message board has been a blessing for me. Being able to post my feelings, doubts and fears. So those of you "lurkers not posting or seldom posting I encourage you to post here and/or other message boards to relieve some of the tension.
Last night a friend now living in Arizona gave me a gift. She called and let me talk and talk for 2 hours. It isn't the first time she has done this for me. In the late 70s, when I was living in Arizona and long distance calls were very expensive she called and let me talk to her for 3 hours. I was extrememly isolated an lonely that time and I've never forgotten her gift.
I've got phone phobia. I never learned to use the phone for anything but business calls. It was literally locked up when I was a child (and I mean LITERALLY) and I wasn't permitted to use the phone or make calls, and I've never got over it. So I can talk if someone else calls, but it doesn't occur to me to call out.
But if it does occur to you to call out, find yourself a phone friend who will let you just talk until you are talked out.
Starling, our phone wasn't locked up but I was so appalled at my grandmother's constant gossiping about NOTHING with her friends on the phone that I never have used it that way. Don't use a cell phone that way either. But EMAIL.. that's different! and it at least keeps me a little briefer than I would otherwise be!
briegull, I use email easily too. And when I discovered forums, newsgroups, conferences in the early 90s, I fell in love with those as well. But the phone gives you a human voice.
The advantage to email and forums is that they are not in real time. The disadvantage to email and forums is that they are not in real time.
I too find myself talking too much. With Charlie being totally unable to communicate, I miss the sound of human voice and someone to talk to. At first, he would listen to me as I talked about my day and maybe smile or pat my hand. Now he does not pay attention and often gets up and leaves the room if I start talking. The people at work have almost quit asking how he is doing, I imagine because I get so long winded about it. One of my greatest supports is my former sister in law. My first husband died of a heart attach when I was 37 and he was 45. His sister and I have always been close even though she lives 2 states away. Her husband has been fighting liver cancer for over a year. We talk at least once a week on the phone, often for an hour or two. We talk about the husbands and what we are going through. We both have our troubles, but sharing them seems to help.
Starling, Check with your phone company on long distance rates. I have a rate that lets me call long distance that is very reasonable. I found it was cheaper than being charged for each call. I have family out of town and I can call them at any time and talk as long as I want to. I love it.
Bama, that is the "funny" thing. I bought unlimited long distance because my daughter is in another state, and my best friend (the one that called me) was in still another state. And at that point my husband was calling the world, mostly in still other states.
It isn't the money, because I fixed that. When I was a kid it really was the money. The phone was for emergencies and for my mother to make phone calls on. I've decided that it literally is a phobia.
If your Internet provider provides phone service in your area, long distance is never a charge. I have Internet, phone and cable with the same company for 1 monthly charge.
Tired of explaining things to him.....yes, me too. Also explaining where a certain restaurant is where we have eaten many times. He just can't place it in his mind. I'm trying to be patient cause I know things are only going to get worse.
I no longer bother to explain which restaurant. He hasn't been able to place which one in his mind for months.
Mostly we go to the same one or two. We went to a local Friendlies this weekend after an errand. He remembered being there before because we were sitting in the same section as the last time.
When I tell my husband he has an appointment with his neurologist, he always asks where that is. Even though we have been going their almost once a month for the past 6 months.
I also try not to give him a specific time for something because then he fixates on that time and asks over and over again if that is when we are doing something.
My husband was diagnosed in 2003 and has been declining slowly but steadily. We've been married 47 years.
He is now in Depends, I assist him with all personal care ........ I shower him, I dress him, I undress him, I help him shave, I clean his false teeth and brush his own remaining teeth, I brush his hair, cut his finger nails, cut his toe nails, cut his food up to eat, hand each of his medications to him separately because two at once confuses him, buckle his seat belt up when we go out in the car, do jacket zippers up as he is not able to co-ordinate his hand/eye movements to get the zipper started, open the umbrella for him, on a rainy day, as he's forgotton how to do that too ...... really, there is little I don't do for him now and I cannot leave him alone at all ........ not at all :(
On the upside he remains cheerful, accepting of his present situation and is just an all 'round pleasant person. He amazes most everyone he comes in contact with, with his attitude, ready smile and general good disposition albeit he has few words to say as he's rapidly loosing his speech. He has always been a very nice man, well liked and respected by all who interacted with him in any way. For some reason or other, AZ/dementia has not been able to steal that part of him away.
He is glued to me like a small child to their mother - it is now to the point that if he cannot see me, hear me or know exactly where I am, he panics and comes looking for me ...... and I may well just be in the next room or even the bathroom !
I just realized this past weekend, after an episode in a store, that my leaving him in the car while I run into the bank or grocery store for just a quart of milk will have to end as I'm so afraid he will think I've been gone a long time, get out of the car and come looking for me ....... and that could be disasterous ..... oh dear, yet another behaviour to keep an eye on :( This past Saturday I was in a men's wear store shopping, picked up some items, put them on a counter where there was no cashier and said to my husband that I would like him to just stand there and keep an eye on the items while I went to look for something else. Low and behold, not 3 inutes later,I look over towards the counter where I had left my husband looking after my purchases and I see him having a very animated conversation with a sales person - I dashed back to see what was happening only to find he had been telling the sales person I was lost and he needed me.
I would think my husband is a solid Stage 5 and quickly going into Stage 6.
I've been sole care giver 24/7/365 for the last 5 years, but now I'm beginning to feel very tired, a little on edge, very isolated and alone - no one to talk to; no one to share a laugh or joke with ........ just no one here at all. I find when I go to the grocery store or to do other shopping that if anyone looks at me sideways I begin chatting away as if I have a bad case of verbal diarrhea - I embarrass myself sometimes but I come away having chatted with at least someone and feeling like I've just had a breath of fresh air. Neighbors know my husband has AZ and I know they care and feel badly about it but, they have their own problems to deal with so, other than passing a plesantry when we meet on the street, conversation is very limited.
I have made a request of our Home Health Care people for some respite care time and also requested one day a week of Adult Day Care Program for my husband to attend but ....... there is a 5 - 6 month waiting list ...... guess I'll just have to hang on a little longer :( I could have my husband go to the Adult Day Care Program as a private payer but that would be over $100.00 for about 5 hours, one day a week, and as most of you know, living on pension, that is just out of the question.
We do have one Son, unmarried, who does try to help out. He lives and works about an hour away and comes to visit us every second weekend and calls almost every day to check up on us.
You know how people can go to a food bank to get food when they are down on their luck ........ too bad we couldn't go to a *people bank* when we're feeling so lonesome, alone and starved for conversation.
This is a horrible, horrible disease and a very long and lonely journey we're all on ........ THANKS for listening ....... Bar-bra
Bar-bra, you are amazing! My DH was only diagnosed about a year ago and as I read your post, I could see myself in 5 years, if not sooner. I already feel isolated. DH can still take care of himself physically and I can leave him now for a couple of hours but I take him with me most everywhere I go because he worries about me until I get back. I long for an all-day shopping trip or a movie and a nice lunch out with one of my friends. Can't do that anymore. Last time I tried, he got all confused and disoriented with me gone all day.
I hope you can get some respite soon. You really need it.
Bar-Bra, your post is heartbreaking. I've been on this journey since 2003, but things have not progressed too rapidly with my DH. However, he does need to know where I am most of the time. I do get to go out for an hour or two first thing in the morning - which is his best time. I leave and he fixes his cereal, eats, takes meds and plays games on the computer until I return. Where I retired from work, they let me come in ANYTIME I want to - whatever day(s), however long I want to stay. It's wonderful to just go in, do my thing and get to TALK to someone about regular things. This is a lifesaver for me, plus the extra income - we only have social security and a very small pension.
My thoughts and prayers are with you and I do hope you can arrange some time for yourself very soon. Hugs to you.
Vickie, your work situation would be wonderful. I always was in a Retail/owner situation and dealt with people all the time, and I do so miss the interaction and someone to talk with. I would love to have something about 8 hours a week doing similar but now it is not possible. (hugs)
Bar-Bra, my heart goes out to you. I can relate to several things in your post. The store situation. I have not been able to leave him at a store counter for months. He would be gone...just like that....and they can be very hard to find. I still do the leave in the car a few minutes to run in the store, but even that takes a minimum of 15 minutes so I am now doing that on a day to day basis. One day I looked up from the checkout counter and he was coming in the door to go to the bathroom. If I had not seen him come in I would not have known where to start looking. That was a wake up call for me. I now park in a handicap spot near the door and at a store where he is familar with where the restrooms are, even though he is not going inside with me.
Imohr: My work situation is that I worked for a law firm for 20 years. Just before my DH was DX'd, the senior attorney was DX's with Lewy Bodies, declined rapidly and is now in a care facility. This is a small family firm. They all understood my situation and still do, so it is very helpful. I don't even do the same thing I did while working full time (Manager of the Real Estate Dept; and had 4 people working for me). I just help out whereever - but NOT real estate - was burned out on that! But they have been wonderful to me and they pay me (by the hour) the same thing I was making before retiring!
I don't leave my DH in a store alone. For awhile we used cell phones, then he got so he couldn't use it, so he just goes with me now or if he wants to go by himself, I let him, but I stay close by where I can see him. I started to do this once when he did leave the store and I happened to see him just outside! Scary. What a rocky road we travel.
I want to thank all of you for your comments and additions to our caregiver stages...No matter our ages, where we live, or our personalities, we've all experienced the same things!
Bar-Bra, when you stated "He is now in Depends, I assist him with all personal care ........ I shower him, I dress him, I undress him, I help him shave, I clean his false teeth and brush his own remaining teeth, I brush his hair, cut his finger nails, cut his toe nails, cut his food up to eat, hand each of his medications to him separately because two at once confuses him, buckle his seat belt up when we go out in the car, do jacket zippers up as he is not able to co-ordinate his hand/eye movements to get the zipper started, open the umbrella for him, on a rainy day, as he's forgotton how to do that too ...... really, there is little I don't do for him now and I cannot leave him alone at all ........ not at all :(
On the upside he remains cheerful, accepting of his present situation and is just an all 'round pleasant person. He amazes most everyone he comes in contact with, with his attitude, ready smile and general good disposition albeit he has few words to say as he's rapidly loosing his speech. He has always been a very nice man, well liked and respected by all who interacted with him in any way. For some reason or other, AZ/dementia has not been able to steal that part of him away.
He is glued to me like a small child to their mother - it is now to the point that if he cannot see me, hear me or know exactly where I am, he panics and comes looking for me ...... and I may well just be in the next room or even the bathroom !" ...IT IS ALMOST EXACTLY WHERE MY HUSBAND IS WORD FOR WORD! Except my husband has only allowed me to put on the Depends (WalMart brand) twice; and my husband has lost his speech; and he doesn't have any false teeth. We have been married 47 years (my husband is 70) as well.
Now I have to cut up his food, though he can still get it into his mouth. He is having difficulty swallowing this past week, and has been vomiting in the middle of the night. I'm afraid that he is losing the physical fight now. It is so tragic for them and for us.
Vickie, my husband can still open his cell phone and hit "2" and "send" and ring my phone, but then I have to ask him yes or no questions to find out why he called me. I keep it on him for the Chaperone feature basically, in case he gets away from our grandson who stays with him during the day while I am at work.
Speaking of cell phones, yesterday around noon I went to pick up my cell phone that I always keep beside me and it wasn't there. I looked on the floor, retraced my steps through the house....no cell phone anywhere! I had my daughter dial my number and as I walked through the house, I heard it briefly but couldn't pinpoint it. After about 5 minutes of the two of us trying, my son joined us on the "listening" for the ring. He found it - when he picked up the lid to the kitchen garbage can!!!!! My husband had thrown my phone in the trash! It survived - that and the Clorox wipes afterwards! <grin>
Bar-bra, Your description of your DH sounds almost exactly like mine...except my DH was diagnosed in 2006 and has progressed extremely rapidly. He is only in Depends at night, but I can see the writing on the wall and know it will be full time soon. I can leave him in the car when I go into the grocery store because he can't undo the seat belt! You need to find some way to get some respite care. I can't even leave to take the dogs for a walk..something always happens as soon as he is by himself for 5 minutes. And the following me around and calling my name as soon as he can't hear me is so stressful. I'm lucky enough to be able to afford to have someone come in so that I can get out. I can't imagine having to do it all day every day without a break. This website and phone calls from family and friends help to keep me sane, but I still need that time away from this awful responsibility.
Bar-bar and Mary, from the descriptions of your husbands they are both solidly in stage 6. My husband still gets to the bathroom on his own, and although I need to remind him about showers, he takes care of all of that including shaving and cutting his nails on his own. And he is an early stage 6 because of language issues.
They don't have to have all of the symptoms of a stage to be in that stage. One symptom is enough.
My husband was diagnosed 18 months ago. He has gone downhill very rapidly. Of course all of us know that the disease was there long before diagnosis. It is rare to get a diagnosis before stage 4. Mostly they get diagnosed somewhere in stage 5.
In August 2006 DH was dianosed with MCI. In November 2007 he was diagnosed with moderate/severe AD. Has been on meds for 13 months now. Big decline but so far I'm able to handle things. But, I have to say this, it wouldn't have been like this without this group. By May 2008 (6 months later) I was having a very hard time coping. I'm so glad I found this place. What a grand bunch of people you are. You make my life easier and I know I'm doing a better job. I am more relaxed and able to go with the flow. Thanks so much!
Thank you so much for identifying the 7 Stages. I believe I am in Stage 6, but I also believe that I am still experiencing aspects of the first 5 stages. I am glad someone understands the gaping hole I feel in my heart. This last couple of weeks have been especially difficult. I have cried every day - not all day, but a real, heartfelt, deep, wrenching sob. This is sooo not me.
Hi All. I surely can relate in most every way. I cannot be out of my DH's sight for even 5 minutes. He is in early stage 6 I think. But with FTD it is a little different. We are all on this demented trip together. Thank you all for this place and your kind and loving words. I am starting to depend upon your being here as I also have very few folks around that truly understand. Peace be with you.
Over the Thanksgiving holiday weekend, I read the 7 Stages aloud to my son and DIL, and I think it shocked them, because while they knew it was rough on me trying to take care of my husband and work, even with help, they didn't realize what I was emotionally going through. I read your comments to them as well. It opened their eyes. They have been so much more compassionate towards me since then. I'm glad I did it.