My husband's dementia has progressed rapidly. How do I deal with blended families?

I am going through the same experience so I don't have any answers for me either. In fact, his kids and brother have tried to get him to sign over his inheritance and rights behind my back. I have finally realized that they don't care about him as they should. Forget the help from them! As long as they leave us alone, I can find help from strangers better than from his own blood. And now I don't feel the need to swallow my emotions from them as they have shown me that since they don't have his best interest at heart, I don't have an obligation to keep them informed on his condition, If they can't call for his birthday or other important days, I don't have to contact them either. That frees me up to handle things on my own. I am much more at peace with just the two of us and not the burden of insincere affection and bother. I wish you the very best and focus only on you and your husband. Don't spend your energy on anyone else. God bless you

Hurting heart it is indeed a harsh world but the reality is that we all pay for those nursing home beds whether we ever need to use them or not. Medicaid has strict rules about qualifying for help especially if a nursing home is involved. Pam Stegman knows more about these rules than I do but briefly if someone enters nursing home for long term care someone has to pay for it. If the patient has the funds it is him either until his money runs out if he is not married or untill he reaches what is called the spend down limit. The wife refered to as the community spouse will be allowed to keep the house and one care and a certain amount of cash. This is why you need the help of a lawyer especially as you have been married such a short time and some assets may be exempt as they can be identified as being yours alone. You can have your husband admited to a NH as a private pay patient which means you pay the full cost yourself. Once the money reaches the spend down limit Medicare kicks in. NHs love private pay because they make more money but are unlikely to accept someone who has less than 6 months money available. There is back door way of getting someone admitted. you need to call 911 and have your husband taken to the ER. Once there refuse to take him home. Tell them you can not longer care for him. You will recieve all kinds of grief from the hospital staff but if you stand firm the State will take over and he will be placed in the first available bed. The State will then oversee all future care and treatment and you will loose all rights to direct his care. I am not clear what you actually want to happen. If it's more help in the home you are unlikey to get it unless you hire privately. hospice can not prevent you going to the ER but you will probably loose their services if you go that route. As far as seeing the hospice medical director they rarely make home visits and indeed do rely on the nurses as their eyes and ears. The team is required to heve a biweekly meeting if they are a Medicare funded and you can request to be present when your husband's care is discussed. The medical directer is usually present and you can ask any questions you have. It is however unlikely to result in a home visit. If you feel the need to have a home visit you can approach any physician will to do so and private pay for that. if you are satis fied with your current hospice care i would advise you not to rock any boats. As far as the son's are concerned. You have told them but the final choice is theirs. you may find they swoop in like vultures once their father has passed so secure anything you feel they might steal unless it is willed to them.

When my daughter was very weak from Leukemia, I called my sisters, aunts, cousins and told them all that time was short, and asked them all to come see her very soon. They did, they brightened her day. They kept smiling for her and it was uplifting to see her cheer up. That meant more to me than having anyone show up for a wake. Call them in.

That is a heck of a system. Even when it's working. I just wonder: what happens to dementia patients who have no advocate? Are they also somehow expected to go through these incredibly convoluted claims processes?

HH, do you have advice you can trust on financial planning? I'm just wondering, if you were able to release some capital while not jeopardising your own future security, would you be able to purchase supplementary care such as a comprehensive review from an independent doctor? I'm sorry if I'm entering cloud-cuckoo land with that vague idea - the US structure leaves me dazed and confused.

I am just overjoyed with so many caring responses and will do my best
to answer all the questions.
As far as his adult sons yes I have tried to tell them that their father needs their visits, if they cant visit a phone call just to hear their voices would be greatly appreciated. My husband provided for these boys all their lives, more than required, as I stated these boys are 43-50 years old. Two younger boys have families, the oldest does have children but no wife, the other one single and no children.
When he started dating in 1999 they only came around when they needed something, always, always getting money from their dad, one even forged his Dad name on an account some years back that caused some problems but their Dad once again bit the bullet on that. So the thing was as long as their Dad wasn't married they could manipulate him which was all the time. So I guess after the marriage the boys felt the getting over on their dad was over because their Dad put me in charge and they didn't like that. once we married I put a stop to it. I became the enemy because they could sugar coat, lie, and take advantage of their Dad.
My husband is type of person that if you asked him, he would give you the shirt off his back but now that he is sick, he is no use to them. The boys were closer to their Mom, whom they loss in 2005 suddenly and unexpected though she and my husband had been divorced for over 15 years my husband was right there for his boys.
Three sons live right here in same city, one in McKinney Texas. Before I married their dad, the relationship between myself and boys I thought was very good, two of the sons and I text and spoke to one another quite often.
We all attended the same church where their grandfather pastored for over 50 years until his death in 2009.
We were engaged but didn't marry until June 2012. Sept 2012 my husband was admitted to hospital and my first hearing of the dementia. Once diagnosed the dementia took over so rapidly, he went from Behavior Hospital Sept 2013 to not walking Nov.2013 to Nursing Home March 2014.
October 2014 the nursing home said they could no longer keep my husband because he was not responding to therapy therefore Medicare(primary), BCBS(secondary)would not pay. I have called Agency of Aging, Nurses Unlimited, even Family Protective Svc as well as speaking with BCBS many times trying to explain and get help. The nursing home transported my husband home on October 14, 2014.
Nurses Unlimited began coming to the home from October 16 until Nov 5 just long enough to help and train me on caring for the bedsores. Nurses Unlimited stated that once the bedsores were healed, and that their therapist was not having success with my husband following commands that they could no longer continue their services. That is why I chose to sign with Hospice, I could not get my husband in vehicle for transport to dr. in order to get his meds because his primary dr. would not refill without seeing my husband since before his stay at nursing home. As far as transportation I called everywhere, and only transportation offered in our city is Easy Rider bus or ambulance. With Hospice I can get meds refilled, nurse comes twice week, and they come three times week for his shower. Only thing I don't like about hospice is I have never met the Dr., I asked many times to meet the doctor but have been told that is why nurse comes and unless nurse feels my husband needs the doctor, he does not come out......the nurse is his eyes and ears. Family protective service did refer me to a lawyer that can get people qualified for Medicaid (we were denied in May) and now reapplying. That is backward as well, I mean my husband has insurance BCBS from his being retired. He has worked all his life, always had insurance and now that he needs it he cannot get the service that he really needs this system is so messed up. It like ok sell your house, sell your cars, sell everything you have accumulated over the years when you are dead broke then you can get benefits such as Medicaid. It seems like the dementia took over so rapidly, he went from Behavior Hospital Sept 13 to not walking Nov. 13 to Nursing Home March 2014, in October 2014 the nursing home said they could no longer keep my husband because he was not responding to therapy therefore Medicare(primary), BCBS(secondary)would not pay. I have called Agency of Aging, Nurses Unlimited, even Family Protective Svc as well as speaking with BCBS many times trying to explain and get help. Nurses Unlimited did come into home from October 16 until Nov 5 just long enough to help and train me on caring for the bedsores he had when NH transported him home on Oct 14. Nurses Unlimited stated that once the bedsores were healed, and that their therapist was not having much success with my husband following commands to therapist that they could no longer continue their services. That is why I chose to sign with Hospice, I could not get my husband in vehicle for transport to dr. in order to get his meds because his primary dr. would not refill without seeing my husband since before his stay at nursing home. As far as transportation I called everywhere, and only transportation offered in our city is Easy Rider bus or ambulance. With Hospice I can get meds refilled, nurse comes twice week, and they come three times week for his shower. Only thing I don't like about hospice is I have never met the Dr., I asked many times to meet the doctor but have been told that is why nurse comes and unless nurse feels my husband needs the doctor, he does not come out......the nurse is his eyes and ears. Family protective service did refer me to a lawyer that can get people qualified for Medicaid (we were denied in May) and now reapplying. my husband has insurance BCBS from his being retired. He has worked all his life, always had insurance and now that he needs it he cannot get the service that he really needs. It like ok sell your house, sell your cars, sell everything you have accumulated over the years when you are dead broke then you can get benefits such as Medicaid.
How screwed up is the system!

Don,t know the circumstances sourounding your marriage but it is often the case that following a divorce there is resentment towards the new wife. All you can do is let it go and get on with the important job of caring for your husband.
it does sound as though he is progressing fast enough to be eligible for full hospice. Is he too young for regular Medicare? Is he on disability? Do you want and will you be able to keep him at home? Regular hospice allows a five day respite admission every benefit period ask if this applies to palliative care too. That would at least give you a little rest.
if he is a Vet he may be able to go into their residential facility. The hospice social worker should be able to help you with this. As far as the contractions are concerned Ferris is correct there is no treatment. If he lives long enough his whole body may curl up into the fetal position. you definitely need to involve hospice in the care of the bedsores. If you are not satisfied with the level of care from hospice and there is an alternative preferably not for profit you are free to transfer to their care. Be very careful with feeding.Puree everything and give small mouthfuls and watch to see him swallow. Sit him up to feed and have a drink available to wash things down. If he starts to refuse food don't force it.

I am so sorry to hear your present heavy troubles. I will remember you&husband as I go about my caring for my parents. I appreciate your sharing here, and really everyone has given such great responses--I may have to print out for my own use since I am often at a loss for appropriate responses.

Dear Too Young for This- those sample answers are great! Just what they need to hear. When all else fails, the last response is the one that really makes it clear...

please print Too Young's response and keep it handy to read.
Unfortunately, it is obvious you children are either selfish or do not care for their father. I wont judge them or how they came to be that way.
All you can do is stand by your husband and work on your own relationship with them.

Best of luck to you
L

I guess I'm one of the lucky ones. My Husband's family fully support me in his caregiving. I pray for you folks that don't have any help.

I cried when I read these posts because I just lived all of it. Grown step-son 20 minutes away, wife an Rn, no help, judging me, hostile toward my attempts to get step-son's help. Such anger towards me was eating me up inside while I took care of his dad 24/7 for 5 years! RE: Husbands children: I finally just mentally 'divorced' the step-son and his family and it felt so good not to care anymore. The magical thinking on my part that the step-son/family would want to help his dad, the unrealistic expectations on my part, based on how I cared for both my parents until they passed, ate me up inside. Once I mentally accepted the step-son/family was never going to help, it actually allowed me to depend on God alone for the strength to care for my husband. RE: medical care for your husband. Once in hospice, they are to come to the home and the patient is not suppose to leave for any doctor appointments, nor should there be any physical therapy. RE: your husbands progressive loss of body function. Exactly what ferris1 stated, the signals from the brain are short circuiting and his limbs are not getting the signals. This will work its way up his body (as should have been explained to you by the doctor to 'hopefully' diagnosed his condition) and eventually the brain telling his lungs and heart to function will note make the connection to those vital organs. Avoiding bedsores is of great importance and Hospice needs to be assisting you with that. Feeding him as he loses the use of his arms needs to be continued, just keep in mind his ability to swallow will start to be compromised and food intakes (size and consistency) will need to be adjusted accordingly. RE: getting help, I pray you can get enough mental energy to start looking into and/or insisting on more help from Hospice!. Where I live and I believe the standard, Hospice and Palliative Care are two separate programs. You must get a diagnosis from a Neurologist and/or his doctor stating he qualifies for Hospice to be covered by Medicare. If that doesn't work and since he is on Medicare, insist the doctor have him transported to the hospital for evaluation [ask hospital about Observation vs Admission]. The law requires hospitals to provide in-home after care for Medicare patients b/c if the patient gets readmitted w/in 30-60 days, the hospital gets fined. That process would get you 'in the system' which would provide you more help and direction, hopefully. I just checked on the web for Hospice services in Odessa Tx (I grew up in Plainview Tx) and they exist. My heart breaks for you, wish I could do more to help. All I can say is 'hunker down' with your husband and try to spare yourself more stress where possible so that after all is said and done, you can regain your own health. I lost mine. My prays are with you.

I'm curious as to where he is being transported if he is on Hospice? Is he undergoing treatments?

I'm curious as to what the issue the adult children have. Are they contending you are not providing their dad proper care while he is on Hospice? Is there a Hospice facility where they would propose him to be admitted?

There are non-profit organizations that have volunteers who can help,with transport. Catholic charities is very good at assisting in a lot of communities. Check online if your local,or state government has elder care services that can refer you to volunteer organizations , if money is a problem, that are available. Some taxi cab or transportation companies offer medical transport for a set fee. Good luck.

TooYoung you are setting a shocking example!!! :) Thank you, I needed a good laugh. Hugs.

Here are a couple of responses to the negative feedback:

"You're welcome to come by & help anytime, since you're not satisfied with what I am doing."

"If I am doing a bad job, tell me exactly what you'd do differently." And then invite them to come & do it differently themselves.

"When is the last time you visited/called to find out how your father is doing?"

"Please feel free to pay for someone else to come here & improve the care your father is getting."

"Would you like to split up the responsibilities of taking care of your father? There's more than enough time for all of you to switch off taking care of him."

"Perhaps you'd all like to come by & hold your father's hands to help him not contract & get so weak."

"Go f*** yourselves."

so sorry to hear about what's happening to your husbands body, I would just let nature take its course, trying to manipulate any limbs could break bones, just do the best you can. my husbands daughter mid 50s is an RN, lives 25 minutes Away, useless, she has not actually talked to her father in over a year, things were very bad a year ago and a Dr at the VA hospital even called her to ask her to give me two hours a couple of times a week respite, she had too full a calendar. She also has badmouthed me to another family member( cousin) but God does not like Ugly, and one of them, the cousin received her due this year, and I just figure God will take care of the Daughter too, I don't wish Alzheimers on anyone, but not only does her Father have it, his two sisters died with it and her mother had Parkinson's/Dementia and she died also. I let it bother me for so long that I ended up in the hospital with the stress, I just kept my husband there with me ( overnight) I knew she would not come and help. So I have forgotten about her, I have too much here to get through each day, I give him love and caring, smiles and hugs every day. just forget about the children, it will bring you down so far you will think you'll never make it. I just want to live one day longer then my husband so my new will takes effect, guess who will not be in it.

Follow your own instincts! Family members who don't help will be judged someday. Try not to let them influence you! God bless you!

Did your husband benefit from the Thanksgiving visit? Was he able to recognise his son and appreciate his presence?

If not, and if there is no prospect of his doing so with any of his other family members either, you are off the hook. You can safely and with a clear conscience leave these people behind. They need no longer exist to you.

But if you feel there is any benefit to your husband's quality of life that his children or his siblings could possibly add, then for his sake it is worth making a very carefully targeted effort to involve them. They will still be nothing to you, but you can set out to make it clear to them what they owe their father/brother. It is then up to them to pay up with their time and attention, and if they don't it won't be your fault.

As you say, quite rightly, this is all about what is best for your husband. That is what you are giving all your strength to, so you have the right to decide: are these people any good to him or not?

Incidentally, don't waste valuable mental space on what is said about you by people you despise. Their opinion is worthless.

Your first question relates to contractures. No, there is nothing you can do to stop this. It is the brain's way of shutting down muscles. Secondly, do not talk to anyone who relates the adult children's attitudes since they are not a part of his life. Just tell "them" you do not want to hear how they bad-mouth you. You are doing the best you can and that is all anyone could do. He will be going soon, and then you never have to speak to his children again if you do not want to. I have a similar situation with my husband's daughter, so hang in there!

Hugs hurtingheart
I understand what you are going through with the "family", I have the same problems with my husbands siblings....not one helps or visits, but, likes to talk trash about me, I don't understand why, except it is their short comings and guilt. I care for my husband 24-7.


I don't have the energy to worry about them anymore..my husband needs me and my strength so that is my focus.

Hugs to you.

I agree, you are doing a fantastic job, and it's unfortunate that Hospice isn't doing more. Have you tried calling them in to re-evaluate him for more services? It sounds like he should be eligible, and maybe Medicare would step in now (I don't know all those rules, but ti's worth finding out).
As for the 'adult children'... it seems there is nothing coming from them at all. Not sure if they have always been this way- what was their relationship with your husband before he became ill? Perhaps they were kept away from him or they were told things that may not have been true... but no matter the reason, you have become aware of the fact that they are not going to be of any use to their Dad, or you. You can ask them to leave if they do show up and become offensive. You can tell them that their Dad needs help, but I wouldn't hold my breath and wait. They don't sound like they'd have the faintest idea how to help and would not be motivated to learn. Regarding the stiffness in his arms and legs, you could ask the Dr for something to help him 'relax' and then try to gently stretch and move them several times a day. Some of that stiffness is inevitable. Again, ask if he can have a physical therapy consult for comfort (that fits into palliative care category- don't be shy about 'pushing' them. One visit should give you the kind of info you need. Also- SPEND any kids' inheritance on their father! Get the in-house help that he needs, and take a break whenever you can. Best of luck in getting through this.

Rest assured none of their comments have any reflection on you! Anyone who listens to them without responding "Oh my, and how are you helping that overworked and stressed out wife? is just as guilty as the kids. You are doing the best you can and that is all any of us can do.

Until they give you a month's vacation and take care of their Dad, don't pay any attention to them.

Thanks so much, I guess I just needed to hear from someone else.
The only transportation here in Odessa, Tx is Easy Rider Bus I am applying for that, it has to approved by doctor, then easy rider which I am told will take month or longer.

Your description of them answered part of your question. These are 40 year old boys and girl. Not really blended if they talk that way about you. You cannot make them grow up or be responsible. You can take care of your husband and yourself. Gossips that tell you of negative things all the time are not supportive. As you said gently tell them you have no time for negativity. Have you contacted the Agency for Aged in your area? They can also give you leads. Many cities offer handicapped accessible buses for transport at reasonable cost. You cannot fix narcissistic. Or stupid. Just protect your spouse and yourself. Document everything. (Hugs)