My DH and I have a "blended" marriage - he has three and I have one adult kid - all over the age of 40 and all live 1000 miles away or more. His two sons live in the Chicago area (both are bachelors; one never married and one twice divorced). His daughter lives in Spokane. My daughter lives in MI. They all have been good about visiting for 4-5 days at a time. One visits every other month. I buy the airline tickets. However, they do not see him often enough to get beyond the thought "Dad is doing okay" (NOT). I sure could use some help from family. We are NOT going to move to the Midwest or to WA so that is not an option. Any ideas on how to get more involvement from the "kids"? When they do visit, they view it as a vacation as in "Oh, what fun things can we do in TX"?
Good Luck with that,we're "blended "also she has four boys,one about a mile away,second 20,third about 40,fourth about 1500,the closest one shows up every few weeks for about 15 minutes tops,the others never,what you see is what your gonna get,since I'm older than LO I told them all she can't live one day alone if something happens to me,they have no plans,apparently couldn't care less,so much for "family"!!!!!!
I also have told the kids (his) that they need to talk together and come up with a plan. If I die first, who takes care of Dad? Their response is "Oh, nothing will ever happen to you!" My daughter is actually more in tune with what is going on. However, the reality is that if my DH goes first, I doubt if I or my daughter would have much contact with his kids. (Their choice)
We are also a blended family. My two children live in Michigan. My husband has a son in the same town where we live and a daughter in a town 30 minutes away. We are lucky to see his son once or twice a month and we have not seen his daughter since early June. I don't need help right now, but I am very concerned that they will not be here for me when I do. I have considered moving back to Michigan to be near my kids, DH's sisters, a cousin who is like a brother to me and lots of good friends - but the thought is overwhelming to me. When we moved here (TN) from Michigan 6 years ago, DH did most of the work - now it would be all me.
We too are blended (sorta) -- husb has 2 kids (girl-36-not married-no kids; boy-30-one newborn) from former marriage & we have a dtr (25-unmarried & no kids) who lives in NYC. We are in TX & the two kids near us live about 30 min away. See usually on holidays only, unless "I" make the effort to go their direction, which is getting harder & harder. I recently read the book STILL ALICE & bought a cc for each one of them & wrote a letter & hand-delivered it on Monday. (except to NYC!) Our dtr actually is more involved & visits a couple of times a year and as we progress with the disease, she helps more & more. I talk to her on most days so she's well-aware of ALL that goes on. "Former Soulmate", I recommend coming right out & saying what you need to say to ALL the kids -- maybe a family meeting on the phone, linked together...then they will all hear it the same way. HOWEVER, be aware that even though you tell it like it is & encourage them to visit and "take your dad for ice-cream or just hold his hand & talk to him a bit", they may not do it...Everyone is handling this disease in their own way & it's just harder for some than others. We also have a choice as to how to handle it, but we are choosing to stay the course...even though it means heart-aches and alot of giving up of our own lives most days. I have talked & talked & told our kids til I am blue in the face. After the Monday delivery, the oldest girl did call to thank me for what I'm doing & told me she was very appreciative for what I do...Hoping she will come to see her dad ~ That's really all I want, but we shall see. If kids have never had a close relationship with their dad, it would be one thing, but he has loved those kids through alot of hard years & loved them UNCONDITIONALLY!! And they know it & agree that it's true...I just think they cannot bear to see him like this. Not an excuse, but surely is a reality. I find myself thinking they are "selfish" alot, but recently I had a moment where I was thinking that way & decided to pray about it instead...I think Satan does a good job of keeping us @ odds with others, family or otherwise, in this life...I feel better when I give it to God to handle...even if it doesn't get more visits, I know my heart and conscience are clear! Until the next time the thoughts creep in...this is a hard battle, no doubt, and it would be better if we had more on the battlefield with us...feel your pain, that's for sure! Hang in there!
I agree with ol Don, "good luck with that." We are a blended family as well, he has 4 kids from previous marriage. 3 live right here in town and I haven't heard from one of them since Lynn's birthday in April. You know, I have given up trying to get anyone, even his children to understand. One just can't understand it until they live it.
I know I had no idea how horrific AD was until it claimed Lynn. Look at the resources the public hears about most often, the sugary TV commercials for medication, God those make me sick! And movies such as the Notebook, nice fairytale, if only it could be that simple.
His family is still in denial, even with him in the later stages and in a nursing home. He has one sister that lives clear across the country that truly understands, other than that none of them do. Or maybe they do, and the thought that it is hereditary scares them to death!? I can understand that.
What I cant understand is the thought that the spouse should be able to handle it all, alone. I swear if I hear "but it is so hard to see him this way" one more time, I can not be held accountable for what I will do. I KNOW how hard it is! I live it every day. But then again, maybe that is why he still knows who I am, and doesn't even know he has children, much less their names.
We have a blended family - 2 sons from his first marriage both over 40 married with children of their own. They live half way across the country from us. I tried to get them more involved but that did not work. What has been sucessful is that I send an e-mail once a month on what his status is and any changes along with a "funny" story or two so that they are somewhat informed as to what is going on with him.
This is another area where I feel lucky. This summer, when all the kids were here, I mentioned to Jenni (oldest) that we needed to discuss plans in case I got sick or my wife outlives me. Her reply was "don't worry, Christi and I have already taken care of that". It was only a few days later that I ended up in the hospital. Christi immediately stepped in and took care of her mother, while Jenni went with me to the hospital. Our son wasn't here yet, but came a week later.
I have tried (and failed) to get any help from my stepdaughter. My advice would be to tell the kids to contact the Alz Assn in their areas and for them to attend support groups to learn about the disease. They need to be educated, and you shouldn't have the additional burden of doing it. The fact that you send them the plane tickets and they regard the visits as vacations is not a good omen. I'm afraid that unless they were caring, sensitive individuals all along they probably won't give you much help, no matter what you do.
Our children are ours. Diane lived with me and was co-caregiver every step of the way. It was wonderful. The others live thousands of miles away and have jobs. They all saw what my grandson and I go through each day when they were at the house for a week for Diane's funeral, and our sons even had to help their dad out of the tub (his last bath - now he showers with me), so they know what I'm going through. One son and his wife have offered to move here and help, but they would lose money on the sale of their house, and they can't get jobs here paying 1/2 of what they are earning. I won't have them make that sacrifice. My daughter cries that I shouldn't be alone, but I don't want her to give up her job either. It will probably only be another year, and that is too great a sacrifice for her as well. Like Marsh's children, ours will take over if I go down.
Some thoughts - Some children are in denial. Some are afraid that if they acknowledge AD and all it entails, they will see themselves there 20 years from now. Some are leading busy lives and they HAVE FAITH THAT YOU CAN HANDLE IT and when you can't, they expect you to say, at that point, "I can't take it anymore - I need you to do ______________." Whether you want them to come and give you a week off, or whether you need work done around your house that your spouse used to do, etc. - ask them. Point blank.
Our churches have women who volunteer both at the Church one day a week to watch the spouses (even have recliners for them!) and feed them lunch and provide entertainment for those so inclined. Some of the ladies, when knowing there is a need, take turns coming over to help.
It isn't an organization, but word of mouth. Some of the caregiver groups have lists of those willing to help. Some need transportation to get to your house.
One lady works for Carelink, but has a neighbor who has AD, so in her spare time she goes over and prepares her meals, and cleans her house!
Marilyn isn't nuts.....I edited my first comments because I thought maybe I was coming on too strong, based upon the thread here, so I deleted part of it!
I have children who are very understanding but are 6 to 7 hours away. The girls have only 1 car in the family and husbands need to get to work. The older daughter has health problems and the younger daughter has children, 13, 10 and 2 1/2 years old. The son has a job with little time off. They are in touch with me often and have told me that when it gets to hard for me to make arrangements for a NH. They have said that they have already lost Daddy and they don't want to lose me as well. They have encouraged me to move close to them but I don't think I can possibly do that right now. If I survive this journey I will make the move. I have also told them that under no circumstances are they to move either one of us into their homes but into a NH. They also know that we have an advanced directive for end of life decisions so that they want have to make those decisions. I surely wish we lived closer because at 81 things are tough around here sometimes but I get up every morning and do the best I can.
Our two daughters live 300 miles south, and 400 miles north. But pretty much they realize their father's condition. They know if anything happens to me they will have to come quickly; and probably put him in a nursing home. We both have powers of attorney naming both of them.
So many of us have this blended family issue. DH has 2 and I have 2. Three kids live in NY. One just moved to FL about 40 min away. No one is really any help. Don's daughter is there if I need her. They never come over unless I ask. His son just has his head in the sand. We saw him and his family for 1 1/2 hrs in Fathers Day. They couldn't get away from us fast enough. My daughter is pretty much no help. My son is my rock. He calls me every day. He has some big problems of his own. He is always willing to fly down if I need him. He has alerted a friend who lives in Tampa to our problems. Although we have never met, I know she is available. Imagine that, total strangers are more available than our own kids. I pretty much am reconciled that I can & will be able to handle this. Thank God for places like this.
You can't choose your family, but you CAN choose your friends. I am thankful for my Church family and many friends here in TX. As far as the kids go, I sent each the book "36 hours" right after DX. I regularly send them articles (some from this web site), also emails. I don't think that they pay much attention. I out and out told them that they MUST call their Dad on a regular basis - at least once a week. Mostly they do. In my support group, there is one younger woman - a daughter whose mother and now father both have AD. She told the rest of us that there is no excuse for adult children not be involved. She also said, and I quote "kick them in the pants to get their attention"?!! We all laughed at the mental picture of this activity. It is tempting........
We are a blended family, but we do have two adopted kids ages 33 & 32. Our son lives next door and only has time for his computer games. Our daughter lives in TN and everything is about her. So when my husband gets further along, I don't plan on any hope from either of them.
Question for you - is the only way they will visit is by paying for their tickets? If so, I think you would be further ahead with less stress if you use that money to hire someone to help and for a break.
Our sons care and are in touch but both have jobs and families with small children. One is half a world away (calls every week and always ASKS), the other an hour away but with a newborn baby and a one-year old. They see that I'm coping. If anything happened to me, a nh would have to be the solution.
Oh ((Mary)) if it could only be that simple. I thought I had put the bitterness behind me, but this thread is bringing it back to the surface. Even when I had my first TIA I got no help. I was in the hospital and told them someone needed to take care of Dad.... it didn't happen. I had to check out of the hospital against doctors advice to care for him.
I guess I do have some anger... because I did ask point blank for help. Like I said he has 3 sons who live right here. In the year before placement I asked that they take him one Sunday a month. I stressed that I needed a break desperatly. Still, nobody ever helped. I will never understand why..... he was just the best Dad ever to those kids.
We are a blended family also, and wow, it is just difficult. He has two, both in another state, and I have 3, two living an hour away, and one in Louisiana. When this all happened, his two said they never wanted him in a home, and they would care for him when I can't any longer. He is the sort that has a bad temper, which most of you know only gets worse with the disease. So, our "plan" was that we could move to where they were, and they would care for him. But what I later found out, was that they mostly intended for me to care for him, with an occasional visit from them. Right now it is like some of you have said, they visit, maybe once or twice a year, its strictly vacation, but never lasts more than a couple days. My daughter in law informed me that she was really "freaked" out about having to help care for him because they have their family and they are pretty independent, and that would sort of make their life hard. His daughter, told me one night when he was angry and packed his bag to go live with her that "he better think about it, because I'm not doing everything for him like you do". She rarely calls, and somehow just shoves this under the carpet and goes on with her life. Which leave me pretty much holding the ball....my three would help in any way they could, but he doesn't respond to them well when he is upset, so I don't think they would be able to do much either, so....who knows what we'll do. I do so wish they would come to grips with reality and face the music, but, I guess like said before, they can't understand something they don't live, especially this. I am not aggressive at all, and never say anything to them, so I have to be partly to blame I guess.
My daughter in law came for four weeks this summer and brought the two little girls 1 1/2 and 3 1/2. She was the best sweetest person with H and he would do whatever she asked him to. Also he would be raging and the little ones would come in the room and immediately he would settle down and say, hi sweetheart. Unfortunately, they live in Japan for the next three years so those visits are going to be very few. We still chat on the skype program with webcam so we see each other and he doesn't respond to that well but still is great support for me just to vent a bit since she now knows exactly how things are going having lived it for the four weeks. His son, however, lives 3 miles away and has not been over to say hi once this summer. I always have to put H in the car and go to his place to keep that contact going. I don't know what it is with kids but it isn't an isolated case where only his son doesn't respond to the need for help so there must be some reason a good share of our adult kids can't respond in an appropriate helpful manner.
those of us with blended families know from the getgo if there is going to be any help with respite or not. most of us are seeing the not. just the basic visiting or a call to check to see how they are has been an ongoing issue as well. they have their own family and grandkids now and cant be bothered with dad. so be it. i dont mind caring for him and will use any/all of their 'inheritance' (if any left) to pay for his care as needed. divvi
I have always told my kids to count themselves lucky if we can just take care of ourselves to the end and not have to have their help. This business of inheritance always irks me. That should be a bonus, not something people routinely count on. I intend to spend all his money on taking care of him also. That's what it is for.
We have four kids. Three live within 25 minutes. They will come when called to help. Unless it is something specific I need help with, there is nothing. Sometimes, I feel so frustrated. I need some relief here. DH can dress himself and care for his personal needs. Otherwise, he sits in his recliner and naps on and off all day. Recently, when I had knee surgery, one son and daughter in law brought a casserole. One daughter brought a casserole. Since then, not much. Another son called once to see how I was. Blended or not, it seems the younger generation is so caught up with their families, their jobs, their working out, bike rides, trips to the mountains, beaches, that they really don't think of us at all. Did we do something wrong.
Boy, reading all of this has made me realize how lucky I am. No blended family as this was our one and only marriage, but my son and daughter were always here for their Dad...my daughter would even move in and stay when I went on vacation. They now still call and/or see me everyday and we are truly "connected". I don't know what the answer is except that maybe they don't see what you see......I think I would just call them and tell them exactly what you need help with. Most people would find it hard to turn down a direct request...or at least I would hope.
My husband adopted my three girls when we married over 40 years ago - they were 3, 5, and 7 years old then. He is the only father they have ever known. Up until now, they have had a good relationship with both of us. I told my daughter that lives here in town that it would be nice if she just dropped by sometimes for 10 or 15 minutes when she is in the area. My husband is high functioning but doesn't like to leave the house and does all the strange things that people with AD do. I think he gets lonely, but doesn't want to go out and do anything. He seems to like it when people stop by for a few minutes.
She told me that all the men that she knows are all acting strange right now and that he was acting that was because he is a man and that is what men do and it is because there are no sports going on right now. I told her that the footballs games have started on tv, but she said that didn't count. She is married to an attorney, but right now her Dad makes more sense than she does. I also told her that maybe all the men she knew had AD and perhaps they needed to get checked. She gives me long detailed lectures in how to handle men............... My other two girls live several hours away. One is real helpful and the grown grandchildren come to visit and help when they can.
I could get angry, but it is a waste of emotion and energy. So - the men out there - is what she says is true or not??????? Maybe I don't know as much about men as I think I do.
Families use to be important and centered around grandparents or parents. Our society seems to have lost that. I remember trying to tell my daughter that her position is to get along with her elders, not expect them to change to meet her. My MIL did not like me much, so when we visited (thank goodness we had 3200 miles between us so it was about every 18 months) or they visited us, I would do what it took to make it a pleasant visit for my husband and kids sake. I would send her a lengthy letter and pictures monthly of all the kids were doing. Never a thank you from her but I did what I felt was the right thing to do and do not regret it. I would make my hb call her monthly and when she suddenly died I was glad I did because he had just spoken to her days before.
When my daughter got married she was having trouble with her MIL - they were butting heads all the time. Mainly because my daughter could not keep her mouth shut. In all other relationships, including with me, she has never managed to do this since she turned 16. It is all about her. Everyone is to change to her thinking and beliefs. My son holds his tongue but in his case when he does open it, it is in anger outburst you don't want to encounter.
I see in my kids where they have adopted the humanistic attitude of me first. That is not the way they were brought up but they are also both very angry at their birth parents for abandoning them and take it out on everyone else. But, they both believe the government owes them - medical, food, housing, etc. Any money they earn should be for their own fun use. They would do good in a socialist society.
And look at the programing on TV, movies, books over the years - it has had the characters treating their parents horribly - not with respect. Even the cartoons and children's programs do that.
We also have a "blended" family, well not really so blended. His daughters have never met my kids. His oldest wants nothing to do with us, won't even let him see the grandbaby, because the divorce from their mother hurt them, HELLO! I didn't even meet him until 5 yrs later.....2nd daughter calls him once in a while and we have talked on the phone, but now she want FLIPPIN "BOUNDRIES" No more inclusion in the family emails that I send out when there is a change. She wants releases so that she can call the drs herself. His family, siblings won't help because they're angry he is in the nursing home. So they can all go jump in the flippin lake. I don't want or need their help! My kids are much more help.
>>>So former soulmate: Don't waste your energy!>> I agree Susan. Use of energy where it matters is more important. They will maybe someday have to live with the 'if onlys' or 'what ifs'.
We are a blended family also and after this thread I guess we blended better than some. I have 3 daughters and Charlie has 1 son. We were both widowed so there were no "exes" in the background. All 4 of "our" children work, have spouses and children of their own. They are willing to help if I ask, but for the most part I do not ask. Charlie's siblings all live 400 miles away but we keep in close contact. Even though I don't receive much physical assistance from any of them, I do get a lot of emotional support. Don't have much for anyone to inherit but then again I never felt that I owed my children an inheritance. I owe it to them not to leave them with debts if at all possible but that's it.
I don't have a blended family. And my daughter and her family have been here for several days visiting. One of the things my therapist told me to do was talk to them about end of life issues, the hard ones you tend to not talk about (feeding tubes, not replacing the pacemaker batteries, surgery issues, etc.) I think that some of your kids may need to be told about what is going to happen in a few years, and in some cases in a few weeks.
I think the whole country is pretty clueless about dementia.
It's funny how money issues often get in the way. I don't mind buying the airline tickets at this point. I look for the cheapest ones available. My DH really looks forward to seeing his kids - he still knows who they are and he looks forward to the visits. SO - I am doing this for him - not the kids. I do resent the fact that the kids always seem to be broke or on the edge. If they have a dollar, they will spend it - no thought of planning for the future. I once asked the oldest (now 51 years old) if he ever thought of what he might be doing in 5 years. He said "No, not really" - no planning, only living for the moment. Once my DH can no longer recognize his kids, the airline tickets will stop. I did ask his middle son if he would stay here with his Dad for a few days so that I could go to MI and visit my daughter and granddaughters and he made up excuses why that would not work! At one time it looked like they might get some sort of inheritance, but with the market taking a dive and the expected costs of ALZ care (and airline tickets - HA), the inheritance will not amount to much. I have consulted with an eldercare attorney to be sure that I can protect my assets as much as possible. I had my own career, 401K, and pension and I need to protect what I can. This thread has been very helpful. Thank you all........
Former soulmate, I think you have the right idea for the airline tickets. As long as DH wants them!
I gave my son and DIL in PA airline tickets as a Christmas present (with three children it tends to be costly), as a way of giving them something important to all of us now, rather than maximizing a possible inheritance. They came in May and it was the highlight of the year for me. I offered younger DS tickets to go to the States for the family Christmas celebration, but he is not using them, with a new baby. The offer will be good again next year.
Excellent thread, former soulmate! I was inspired to send a note to DSS (dear stepson) and ask that they begin taking DH one day a month to give me respite. We will see what happens. I'm not expecting too much -- plus DH is likely to refuse to go.
Hi Weejun, I did just that. Instead of spending the day with his Dad, he offered to pay for an extra day at daycare . (remember my "me"day?) I grateful for that, but is it that hard to spend time with his Dad when he only lives two miles away? That why sometimes they can't remember having children.
You know, this thread is just so sad...it's heartbreaking to hear over & over & over again about kids (ours included) who live a short distance away but just cannot or will not come and see their parent who is going to die!!! Heart-wrenching!! What a selfish & sad world we live in. It also speaks volumes about what if "we" needed help in the future...I guess we'd be SOL, that's for sure! :( Dagma3 - Thanks for the LOL this late @ nite..."all men are acting strange right now because there are no sports on"...How crazy is that?!?!! Susan L - Shock & Awe! That's all I can say about your post where his dtr wants releases so she can talk to the Dr's herself...Absolutely NUTS!! There you are trying to inform them of the changes & what do you get...A boundary request! Absolutely ridiculous!! Bless your heart!!
My heart is sad for those of you who's family not only does not help out, but makes your lives harder. Please find your support and comfort from others and do not let these thoughtless people create more difficulty in your lives! I too consider myself lucky. My two children are a constant help and comfort from wherever they happen to be. My DH's Mom passed away 2 weeks ago and, apparently, one of her last conversations with her daughter (She had four children) had to do with her concern for my DH. Subsequently, two of her children have talked with me about plans for the future and their commitment to help in whatever way we need them. I consider myself lucky and blessed!!! Even with all of this care, there is a reluctance to acknowledge the level and daily impact that the AD has on DH and our daily lives. It is hard for children and siblings who have relied on the strength of this man for decades to admit that they are losing him. I know that it is hard for me as well. I don't know what the answers are to getting family to be attentive and caring. I wish I did. Hugs, Sue
I can really make it without help from the kids. The thing that hurts me, is the fact that they can so easily ignore their father. One sons excuse is, he can't bear to see how his dad is failing, and he doesn't know me any way. Well, let's just write good old dad off. I won't hold it against him. They should just remember, your children may just treat you the way you treat your parents. I will just continue what I'm doing right now, just live my life one day at a time with my sweetheart. Just doing the best that I can.
PS - I have been feeling guilty since I posted a few days ago - I was being cynical and not thankful for what we do have.
After the talk with my daughter who doesn't want to spend ten minutes with her father, we had an appointment with our doctor - we both see the same one. I was getting a B12 shot, but the ARNP came in just to say hello and asked how we were doing.
I related that my husband has been having a hard time recently - not wanting to take his meds, saying he is ready to go, etc. The ARNP was so sweet, she stopped what she was doing, sat next to him, held his hand, stroking his arm and listenined to him while he told her through his tears how afraid and frustrated he is.
She reminded me that they have a 24/7 number and not to hesitate to call it. I told her that I didn't think what he was experiencing as an emergency and I did not want to bother them. She went out, got the other doctor in their practice that we haven't met and introduced her to us and told her that we might be calling her. She told me that they want to take care of us, no matter how small it may seem to us.
The ARNP lives close to use. She told us that she makes house calls, that Medicare pays for this and that we need to start doing that to keep my husband on target.
Now, I might not get what I want from my family members, but I sure count our physician and his staff as a very large blessing. While they aren't "family" in the traditional sense, they sure are making us feel cared for and understood.
I wanted to post this to let folks know that ARNPs can make house calls as well as report the positives that we are so grateful for in our lives.
She also told him that she might "kick his butt" to get him out of his mood - I think he heard that too :-). Excuse me for using loose language, but I think my husband heard that as much as the hugs. It seems with his AD, being subtle doesn't work anymore.
I know my daughter is frightened and just doesn't want to deal with the reality that her Dad is loosing his functioning.
dagma, it's wonderful that you're getting such great support from your doctor and his staff. It must be very reassuring to know they make house calls. I'm all for a positive attitude, but sometimes we just need to get things off our chest and this is exactly the safe place for it. Please don't feel guilty, and please do continue to say whatever's on your mind.
One thing I pointed out to my stepdaughter when she refused to help, is that she is setting a poor example for her own children on how to treat a sick parent. I told her that if she is sick someday, I hope her kids treat her better than she is treating her Dad.
MarilynMD - Glad you told stepdtr to think thru her actions...wondering what her reaction was to that?? Just curious. Dagma, I agree with Folly - This is truly a SAFE PLACE to say what we need to say & otherwise would be holding it in! Glad you are blessed with a wonderful "medical" family :)