Today and tomorrow's Blog (Sorry it's late - I was out all day with the Support Group) is about having to deal with distant family members who criticize your caregiving, question the extent of the disease, and are too busy to help. I have no solutions, so I am asking for yours. How do you handle this frustrating, anger provoking situation?
I feel very fortunate in this regard. All of our family members, close and distant, are fully aware of the situation and support me in everything I have to do. My wife's sister, who lives 1000 miles away, came to take care of her while I was away for 4 days, a trip I take once a year. As soon as I got back she asked the dates for next year's trip so she could help me out again. I have had family members as well as friends comment that they feel I am doing a good job taking care of my wife. Our kids know the strain I am under, and do all they can to help - even though they live far away. Yesterday, our son, who almost never calls, called just to see how things were going. Our daughter is flying in from Chicago to Boston, and then driving 5 hours to our home, for 2 days visit over Memorial Day.
I would have responded to this blog sooner, but I had to figure out how to say it in words that could be posted in a public place!
This blog really hit a sore point with us right now. We have family members who have not written or called in several years who are now very anxious to come and stay with us. Their idea seems to be that they can spend several hours to a couple of days here, and then they will know all about our situation—they think—so they can talk about us to other people. No offers of help or even questions about how things are really going. They don’t need to ask us anything, because they already know everything. Grrrr….
After five years of dealing with the monster of AD in our house, I no longer have the desire or energy to make this easy or palatable for other people. I feel like my priorities are to take care of my dear husband and try to live through this myself. Anything that interferes with either one of those things, I have very scant patience with. I feel like it is taking everything we have to get through each day, with nothing left over to be polite in spite of other people’s rudeness, or to offer them hospitality when we are wondering how we will put food on the table for the rest of the month.
After several unpleasant experiences during family visits here, I decided that, this being my home, I am entitled to set limits. I don’t want to walk around angry and hurt and jumpy for a couple of days after a visit, and that is the reaction I’ve had more than once. Why should we bend over backward for people who don’t even try to understand what is going on with us? I’ve seen what these visits do to my husband, too, and how completely depleted he is after trying to visit with people.
Some years back in a caregiver seminar, one of the speakers told us that at some point, we may realize there are some people we don’t want to have Thanksgiving dinner with any more. This same speaker told us that with some family members and friends, they will distance themselves from you through the entire journey with AD, but after your loved one dies, if you come back and try to “make it up to them”—for not being there for them--then they will be friends with you again. At that time I didn’t know what he meant. I do now.
In self defense, I have decided that when people are not helpful but still offer criticism, I have the right to not accept their input any more. If that means I don’t answer the phone when they call, that’s what I do. If they want to come visit so they can check out our efforts at survival so they can judge them, then I don’t let them visit. Of course, then I’m the bad guy—and none of these other people think that they’ve done anything wrong with their hurtful actions. But I really do feel like we are down to the level of just trying to live through each day, and if I offend some “helpful” (nosy) person, too bad.
Maybe this isn’t what you meant by how to deal with people like this. But sometimes I don’t think there is any other way to deal with them. There are some people who just are not going to be any help at all, and it’s best just to not listen to them or be around them.
Yes, you said it very well. I actually was a bit surprised more people did not respond, because I know from talking to people at conferences, in support group, and from e-mails, that this subject is BIG with many, many spousal caregivers (and all caregivers). When you're the sole caregiver, whether a wife/husband or stepmother/stepfather, you're always exagerrating (from the distant family members' perspective).
I, like Marsh, have been lucky. My husband's siblings are very supportive. His brother (former business partner) will take him on junkets to the business sites, and get lunch with him, and just have a low-pressure pleasant day. The brother in Colorado has him out once or twice a year for week-long visits. He's scheduled to go again in May. (for as long as he can fly unsupervised, I guess.) His sister has been great too. My family totally understands, and no one has avoided us at all. I think in the earliest stages, when I started describing how things were getting weird, they didn't quite get it, but eventually they all saw it.
My DH has only one brother and his mother is still living and going strong at 90, at first in 2003 when we began to notice a change, they would have no part of believing that anything was wrong. As my dh progressed they accepted it and just stopped having anything to do with him. If he gets to talk to them I have to dial the phone and then he talks, they never come to see him or anything else. They only live 40 miles from us, its a very sad situation and I feel so sorry for my dh because he hasn't lost his feelings just because he has Ad.
I feel a bit lucky that my DH's brother has also been diagnosed with AD so my SIL share notes from time to time. I have three stepchildren with this marriage and they all vary in how they treat us. One sends me frequent emails telling me how thankful she is to have me in the family (caring for her Dad in particular). One seems pretty understanding, but still gives me the impression he thinks if his Dad would just read more, do those crossword puzzles, get out an exercise things would be better. He doesn't really seem to understand how that is impossible now. The third child is someone I don't think would cross the street to see me and I feel more or less the same about her. She isn't involved, which is best - except I'm quite sure she loves to gossip (nothing positive) with at least one family member. This is our third marriage and I have stepchildren from my second marriage who are willing to treat my DH as a step Dad. My oldest son has a grandmother-in-law with dementia so that family is definitely understanding and helpful. However, for the most part, I am in the caregiving role almost 100% on my own. I can't imagine my DH going off to visit for a week - he is attached to me at the hip! Frankly, I don't think I would enjoy that - BUT, I would like him to stay for a couple of hours with one of these kids to give me time off. That has happened TWICE in 4 years!
My husband is going into 5 days of respite next week. To avoid any advice of criticism from his sibs, I chose to not even tell them. After all they haven't seen any reason to call and check on him in over two years. His sister called one time when we didn't make their yearly Christmas get together. I told her he was going into hospice, I haven't heard from her again and that was in Jan.
I mowed the lawn last night to work off my upsetness with my DH's sister. I had called her, she never calls or visits (we live too far away but she expects us to go there), to ask 2 questions which she answered. I tried to get off the phone as soon as possible but she kept asking me questions about my DH. She has not seen him in over 2 yrs but was telling me how to take care of him, what type of placement he needed, etc. I came all too close to telling her that if she knew so much why didn't she come and take care of him, or better yet, I'd send him to her for a month and let her care for him. She acted as if I have had my head stuck in the sand all this time and she was the only one who knew anything about this disease. No, I will not be calling her again. Sorry, I just needed to vent! Take care!
I think my adult kids recognized symptoms of bad behavior before I did. Family is great. It's the neighbors. Until this day some of them wonder why I "put him away". This despite police visits for violence and some pretty scary actions of DH's part.
bluedaze, tell them, "He tried to kill me. I decided I wanted to live." and leave it at that. I haven't had a single question about the police car in my driveway two weeks ago. I went public on what was going on, and it is amazing, but I'm being supported on all sides.
People have not only offered to help if I "need anything", but on two occasions I was actually given suggestions on what kind of help I might need, and in both cases it was pretty practical help being offered. So far I haven't taken any of it up, but just having the fall back option of being taken to my husband's next appointment if I couldn't have managed the highway drive for myself, made it possible to try.
But still, if someone had said anything negative that was what I was going to say. It helps that it was the truth. I really did give in, allow him to leave the house in the car, and called 911 because I had decided I wanted to live.
OMG Starling-we went through the same thing-not fun. My immediate neighbors were there for me as they knew the situation. Most "outsiders" think AD is just cute little old people forgetting where they parked the car
This is a second marriage for both of us. He has children from his first marriage and some other relatives. My side of the family is very supportive. His side has yelled at me, tried to dominate me, take control and told me I am doing everything wrong. I had an offer to move him 1/2 way across the country to live with one of them if I couldn't take care of him. They even tried some legal action. Their ignorance was appalling and their actions were very hurtful.
I've been told by many friends that his children were only after the money. So, not only have I lost my husband to this disease, I've lost a portion of my family (including 3 grandchildren) and had to go through all of the doubts of wondering if they were ever there in the first place.
Dh's daughter had agreed to have him live with her. She lives across the country from me so I would see him rarely, if ever. Due to his anger toward me I think I'm going to accept her offer. The choices are , he goes into a ltc...but really he does not need nursing just someone with him all the time, or I could go into assisted living with him, that doesn't solve the anger directed at me, OR he can go live with his daughter. Since I have no family, I just can't do it on my own any more. Well, that's my plan. We have to get all the health issues looked after first. We still have a few appointments. She thinks that she and husband can look after him better than I can and I agree.
Anna, that sounds like a good plan, providing his daughter is fully aware of what she is getting into. Will he direct his anger at her if you are not around and then what? You have my sympathy in this difficult decision. I agree that in moving into assisted living with him you would only move the problem to another location but at least you would have more support than you have now. Good luck.
Yes, I would have more support and that would be the reason for the move. The daughter, of course, doesn't know everything that is involved. He visited with her for two weeks last fall and she calls and I email her regularily. Her husband was in search and rescue in the military and has some limited medical training also is a strong fellow. He would be there to help as now works at home.
Of course he could become angry with his daughter, who knows. THey like and respect each other. She is his favourite. If it didn't work he'd be in LTC I guess.
Yesterday he went to a day program and loved it. He thought he was helping the other participants. Perhaps he was as he is physically strong and was apparently sympathetic to those who were physically handicapped.
My DH Dale is now in a NH and I waited till the dust settled before I told any family. I have mostly hidden the beatings from his side of the family. We both have siblings and children from our previous marriages. My support group told me that I must ask for help, well I did and no one offered so that I was hesitant to call and inform them about his placement. Well I called his siblings first but before I could call his children the phone lines were burning up between the siblings and my DH's children. I am talking minutes here not hours or days I decided when I was going to call I was going to call all of them.
I thought things were going pretty smooth and his siblings went to visit in the NH, his children have not seen their father yet and it has been 3 weeks.
I get a call from the social worker at the NH and his sibling wants information and she gives her formal newly married name which I did not recognize and refused that info be given, you guessed it, I got another call that this person was insisting on information and then the remembered the sibling said I am his sister I have the right to know about my brother so I agreed. Then I get a call from Council on Aging that they are inquiring about the assessment that was done on my DH and they wanted to talk to her.
Well I can't take this lying down I called my DH's baby brother and wanted to know what he was up to and he told me that he was not going to take the fact that his older brother was in a NH and he was going to do everything in his power to get him out. He does not belong there and he is not as bad off as the other sibling who is in stage 7 and unresponsive at best. Little brother said he spent 3 hours with him and tried to trip him up but he answered all questions perfectly. What questions? Was he using any AD testing questions? Where did he get his degree in Psychiatry?
Now with all the guilt and grieving the doubts the loneliness and the whole gambit of things we spouse's deal with I get bombarded with 4 siblings who are ready to go toe to toe with me.
I am ready to take the gas pipe but I have an electric stove.
Can anyone offer some insight or perspective into this family denial
You need to make certain you have all of your legal documents including Durable Power of Attorney handy and your attorney updated on a possible battle. You don't have to allow them access to his medical records. HIPAA requires your signature if you have DPOA before they can release it. Showing it to them isn't going to convince them any more than you telling them or them seeing him. You know you did what you had to do, and you realize that they are in denial. Until they accept the situation, they will fight you. Others here have been in your position, and some siblings and children fight for a long time. If you will look at some of the earlier discussions, you will see how they dealt with it.
What you have to go through with your husband is bad enough, and to have brothers and sisters and step-children come down on you is even worse. I'm sorry that you are having to go through this!
I've been there with my husband's children. They tried to get conservatorship over him. My attorney did a wonderful job and was able to prove to their attorney that such an action was not going to make it because of the paperwork that had been done and when it was done.
Mary is right, they are in denial. At this point, you can not do anything right as far as his care is concerned in their eyes. It is very hard to do, but ignore them and let them go through the process.
As far as them getting information, what I ended up doing for his children was to allow the facilities he has been in update them if they call but reminded the facility that they are not allowed to make decisions on his health care. This helped in some ways as they were getting information directly from the source.
The other thing that I have done all along that has worked out fairly well is I send out e-mails on a regular basis to his children, the rest of the family and friends on where he is and his progress. E-mails are nice because you can think about what you want to say and how and it takes the emotions out of it.
One last thought, giving them too much information and allowing them to badger you can cause you problems for a long time. I am still wrestling with how much information and what to give but continue to do the best I can.
Most of my husband's family were wonderful and supportive, but they all live fairly close to us. It was the one child that lives far away that gave me the most trouble. He just didn't want to see how bad it was and never came to visit, and on one occasion got very angry with me and accused me of manipulating the situation for my own ends. Now my husband has died, I think it is the hardest on him. So my advice would be to do what ever you can to encourage visits and involvement - so the family can see how bad it is. Unfortunately, this didn't work on the one child; he just would not come, even when I told him his father was dying - he didn't belive it.
Thank you Mary I do have DPOA and Living Will and A Will that we had done a few years ago. Actually it is ironic that it has to be used now because it was My DH who wanted it done once he turned 70. It was his birthday present to me. I thought by giving them all they need to know and who to call and ask that I was being open and above board with everything. It made no difference that I had weekly beatings and got Cellulitis because of it. His brother told me that my DH cannot live with me because I am a Bit........ and in his opinion we just are not able to live together. Get him an apartment but not a NH, get assisted living. Now if everyone who has a medical degree agrees that my DH is in the right place who should argue with that. His siblings should be so happy that he is getting the best care possible and that I am safe from his abuse. OOOOOh no that could not be their first concern. You would think after being married to their brother for 34 years without ever ever a diagreement between me and his siblings I guess it was too good to last. Thanks for listening and your advice. I do know that I have the power to stop all of the inquiries but I just want some peace of mind.
Jenene, the next time one of his family members says that he doesn't belong in a NH, ask when they plan to take him out and have him move in with them...that should take care of that.
Well, Sandi said it first, but I second the motion. If they want him out of the nursing home, and they can get an assisted living place to accept him, AND they are willing to pay for it. Tell them to go for it.
Or even better tell them that if they don't like his nursing home, they can take him into THEIR HOME with them, but other than that...
If they are being totally impossible go to your lawyer and have him handle the situation. They are not allowed to harass you.
Here is the latest. I went to see my DH and he asked me if I wanted a divorce. Just out of the blue and I was speechless. Of course I don't want a divorce I want to spend the rest of my life with you and he said I know that was the answer he wanted and he dropped the conversation. Last night I went to see him and he was upset and it started us both crying and we were trying to console one another but the man in the bed next to him had his TV so loud we could not hear each other. Dale and I went to the nurses station and asked if there was some place we could be alone and they locked us in the dining room which is closed when no meals are being served. He told me that when his brother came to see him that his brother told him that he was going to do everything in his power to get him out of there and away from me. Now I know I told you all in another blog that I talked to his brother and he told me that same thing but never dreamed that they would tell that to Dale. What were they thinking to put that upsetting thought in his mind. Thank God it was one of his good days and he told his brother that there was no way that he was going to seperate us and that he was to drop the subject because my DH told him that he loved me and that was the last word he wanted to hear on the subject. It doesn't stop there, his sister called him to the phone and told him the same thing that they were going to get him away from me apparently when brother couldn't get his thought across he called for back up. My poor DH that he should be subjected to this. The NH and I have an appointment on the 24 to discuss his future care and if this is going to be their way of denial (As long as there is denial there is no ownership of the situation and they can pretend all they want that this is not real but once they accept then they take ownership and that is not happening) Thank you for letting me vent and helping me keep this in perspective but this is so surreal it had to be written maybe to help others. I will give an update from the NH when we have our meeting.
Our support group leader had an excellent description of distant family members who criticize or second-guess the care we're providing. She call them "seagulls" - they fly in and sh*t all over everything and then they fly away. Excellent description.
Jeanne56 - If they continue to "pester" your husband, does the facility where he is handle not allowing specific people to visit or talk to him? I never got to that point but I did revoke letting them take him on outings outside of the facility. As they were going for conservatorship, I could just see them taking him out and getting him to sign something or just removing him from the area.
I know legally I could have reversed whatever they did, but the damage that would do to him and the time, effort and money to correct the situation weren't worth taking the chance.
Iggy - love the seagulls description - it is so true many times unfortunately.
Yes therrja they do and if there are more times that they are going to upset him then I can have all visits and phone calls stopped. He is there for the best treatment he can get and not to undermine what good can be done for him. I have not allowed anyone even me to take him from the NH since he has only been there less than a month so that he may adjust to the idea of his new home. I just called the NH and he is doing fine so what had upset him last night has not spilled over into today's mood.
The summer of 2007 was marred by "segulls". Sisters wanted to give him a road compatible scooter, when we were just arranging testing to get his license back (NOT). I was also in the midst of legal stuff including getting Guardianship. Other than the sister that comes home in the summer to visit and sees us several time during those 8 weeks, we don't hear from or see any of his family. Nor do they call, or otherwise be in touch. They've made it clear that they believe I've cut him off from them. I admit to having given up on trying to stay in touch when they made it clear, they 'didn't want to know'. One sister does call, when she needs help with things like applying for Medicare for her hubby, or the like, but nary a work about her brother. At the time of the scooter business, the visiting one also said if she had an automatic shift car, she'd take him to a church parking lot to practice. They actually brought the scooter to him behind my back and had him convinced to keep it a secret from me. Needless to say the sh*t hit the fan. I told them to come get it. He can't have it. And if they don't I'll have it removed. Did you know I was unreasonable, because the sister who had to come get it had had to work overtime and "she doesn't have in-home help." Oh, and where was I when he had the Strokes? Why hadn't I had him treated?" She never did stop ranting long enough for an answer to any of it. (The Strokes happened before we met). Once we got the results of his driver testing attempt, I sent them all a letter, informing them of his results. There is no license. A license is required to drive any road compatible motorized conveyance, so no scooter. I backed this up with references to the Secretary of States Office and the Police, and the testing Department. I then promised to keep them, informed of any significant changes. I also told them that if they'd care to visit, or help in anyway, they would be welcome. However, I will be making the decisions for his care with the consultation of the professionals involved in his care, and if they can't respect those decisions from me as his wife and caregiver, they will have to respect them from me as his Legal Guardian. I sweated out how this summer would go. Other than one call from the sister who only calls for agency information help, the visiting sister came over half a dozen times, and a couple times we went shopping or she took himn shopping. Everything low key. Nothing from anyone else then and not since she went home. Thank God for a couple friends, my family and our agency help. We'd have been goners by now without them.
As usual, a topic that stikes a chord. I'll just plagerize (sp?) what Jan K and carosi wrote. Well done, thx for saving me the time. Iggy's "seagull" analogy. How do you top that one? My family has been awesome.....there when I need help. My oldest sister took a week vacation from work as a nurse in an Alzheimers unit to watch my wife for me. Fourth time my sister's have done this for me. My 80 year old mother never says no when I desperately ask for help. DW's family? Best effort has been to suggest their research suggest milkshakes improve AD. Same sister called last week, (like clockwork, once every 3 months) to ask if DW getting better yet. It is what it is...... Thenneck
thenneck, "getting better yet"????? I've heard of denial, but that is rediculous. Have you told her dementia is fatal? If I was dealing with that every three months I'd be totally out of control.
I think I'd want to knock some sense into the milkshake person as well.
When my mother was in her final stages of Colon Cancer after 18 months of traditional treatment, may be three months left per the doctor, I called my out-of-town sibs. I explained to them her treatment plan which included radiation on a large tumor that was beginning to block her colon. Surgery was not an option as the cancer was in her liver also. The plan was to keep her confortable and insure the highest quality of life possible during her final days. They all knew this. Mom was also planning a trip to Germany to see her extended family. She wanted one of us to go with her and no one else could so I went. We left on October 10th and were gone two and a half weeks. She passed away in late-November.
Anyway, during this time, one SIL wanted to take her to Mexico or Seattle (both were mentioned) for urine injections that were supposed to cure cancer. A brother wanted her to be on an "all grape" diet for three weeks. This also was supposed to cure cancer. I also recall something about a $1,200 radio-wave machine that was a cure. I would have been the first to try any of these early on if I thought they would have helped her. Needless to say, I became angry with various ones. I was told more than once that "if I really loved mom that I would do anything to cure her." I finally called each of them and told them all that they had a choice did they want to spend the money to come visit HER or spend the money to come to her funeral. I told them that if I had the choice that I would come visit HER and skip the funeral. I had to get pretty harsh with them. My sister in Florida made the trip to visit HER and thanked me later for pushing her to do this.
My point is, so many family members who aren't close physically or mentally to an illness and not involved in the day-to-day care don't have a clue. Can you just imagine the quality of life that my mother would have had during those last couple of months if she had tried these "cures"?
I'm so glad you took her on that trip. Mom wanted to go to Indiana and visit her hometown and her father's grave. She was too ill to go and we never made the trip. I've always wished we'd dont that.
Mawzy, I almost didn't get her home. The doctor had told her that if she passed while in Germany, that we may not be able to get her back to the US. We made it back to Dallas and she was doing very poorly. An angel in a stewardess uniform told us that if the pilot knew how ill she was, that he would refuse to fly her. My mom put on the best show of her life and got on the plane. We made the flight to Salt Lake City. There, they helped her get home. The pilot allowed her on the plane.
She was so happy in Germany visiting her cousins and Aunts and Uncles. Yes, it was so worth the effort.
Friends I have had a great load off my mind. Had a meeting with the Dr. and staff at the NH and they could not have been any nicer. The Dr. said that I didn't have to take any more stuff from my DH's family and until they are ready to accept their brother's condition and deal with it that he will run interference and so did the head nurse of station 3 say that she is well versed on dealing with difficult families and their narrow mindedness. My DH is in the NO stage, anything I want him to do or that I can do for him he says no. I know that he blames me and the doctor for putting him there because he repeats it everytime I visit. He wants to know if I am having an affair with the Dr. I went to see him yesterday and he said "The Mexican" in the next bed to me tried to kill me yesterday. I asked him if he told the nurse? NO, she was getting him ready for bed she should have seen the knife in his sock, that is where he hides it. Then off to another subject. Tomorrow is another day.
Here is the latest. The inlaws are now writing notes. Please let me take my brother out to supper. She gave one note to the nurse and one to my DH to give to me. I know that she and the rest of them will steal him. The notes are taped to his chart that under no circumstances are any family members to take him anywhere but to the dining room. They are not going to give up without a fight.
Jenene how horrible for you! It is hard enough having to place him without his family harassing you this way. I don't think I would handle this as well as you are. Iggy, loved the seagull comment. That’s a keeper!
Nikki My next support meeting is Monday night and the seagull comment is going to be told so that others there who need to, can release some tension by laughing at it shaking their heads and agreeing.
Good news and bad news. Not all the seagulls have come home to roost again. My DH brother is still trying to take him away for a "weekend" but thank the Lord the BIG notes in his chart say NO ONE but spouse is allowed to take him off site. Whew that still is in place. It does scare me because his daughter called for an update and they asked her name and said she was not on the list to have that information released to her. I said I would check because all family members have access and I have not changed that. Just as I suspected the orders were therein tact with all children and siblings to be given that info. Someone new I suppose Good news his children are accepting a little at a time about the need for stability for their dad. His daughter emailed me and wanted to take him for Thanksgiving holiday and even though her heart was in the right place I had to refuse her it would be too many hours in the car and what would she do if there was a melt down. Please I said don't ask me to jeopardize one second of good time for selfishness on your part to want to have him with you more than a few hours visit at the NH. I left her with the thought that we will have a target of Easter Holiday if all is still steady as we go. We are just starting to take him outside for a walk around the parking lot and tomorrow I told him for a treat if he stops arguing with me I will take him in the car for soft ice cream. Well it did not sink in so after a few times maybe 10 I said honey you are still arguing and I must warn you that your treat is fleeing away.....I had to laugh and then cry because I looked back at him after looking at the floor and shaking my head thinking that I wasn't getting anywhere with him and there he was holding his lips together with his fingers. He said that he sometimes can't stop things like his feet wanting to run when we go for his walk and now his lips that won't stop arguing. I got through to him YEAH. I laughed and cried and hugged him so hard and said Ok honey that was a great big try on your part and I will take you for ice cream. We all make such a big deal for what we think should be such a little trying on their part because we know it is not a little effort on their part but a big effort. I just had to share good news since I have been venting so much lately
My husband's family (he comes from a family of 10) all live 7 hours away from us but they are a wonderful support for me. They often tell me how lucky Charlie is to have me and how glad they are that I came into his life after his first wife died. I have received flowers at work with thank you notes from them and four of them came up this summer and took both of us away for a long week-end to celebrate MY birthday. They have even suggested that it might be better (for me) to place him. My step-son (whom I love dearly) lives only 2 hours away and seldom makes the trip to see us and rarely calls. I know that it is hard for him to see his father this way but that doesn't make it right. My three daughters call and visit often and always say "what can we do to help"