A Difficult Week

[Crazy4Canning]

Hello Everyone,

 

I'm asking for some prayers and encouraging thoughts.

 

In a nutshell, this week my husband and I are researching care and living situations for my parents. I wanted to do this a year and a half ago, and my husband said no, we would just support them financially, he couldn't bear to abandon them. The financial burden has been draining. It's turned into anywhere from $12,000 to $20,000 a year, including food, clothes, etc. Over the past few years, it has totaled almost $40,000. My husband has picked up part time work and so have I...we are being nickle and dimed to death, it seems. He took a few days off this weekend and got the epiphany that I knew for a while, that if we continue assisting them, we will be putting ourselves in extreme financial danger.

 

I am calling social services today, to get them more benefits than they already have. Thankfully, I have friends in social services that can point me in the right direction.

 

My parents aren't completely without funds, but they have been living beyond their means for some time, relying too heavily on my husband and I. What was supposed to be a limited form of support a few years ago has turned into supporting them for almost half of our marriage of 7 years. We were paying my dad to help us with some remodeling but we realized over the past few months that some very expensive fencing now has to be redone because it is crooked. Things have to be touched up in the laundry room because they weren't done right and the kicker - some electrical needs to be re-ran because it wasn't labeled correctly...we have to open up a wall and make a huge mess in a finished room to fix it so our insurance will accept the remodel. It's costing us more money in the long run...

 

So. My dad is pulling down social security and a very small VA benefit. Their rent is almost all their income. My mother is almost completely blind and physically handicapped. She needs more assistance than my dad can provide. Yet when we've approached this in the past, mom declares everything to be 'fine' and that 'god will heal her any minute now'. That minute has been anticipated for 7 years. They are constantly behind on every bill and when they were chosen for VA subsidised housing earlier in the year, Dad turned it down because he said, it was too small and mom would hate him for having to live there. He says he would have to rent a storage unit for all their stuff and it would still be too much money. Another spin - Dad is becoming increasingly irresponsible with money. He was taken in by that Nigerian FBI scam, a few months later he accidentally left $1200 in rent money on a counter in Walmart...it was gone 3 minutes later. . . He only tells my mom things when he has to. (TMI, I know...)

 

I am well aware that forcing my parents to downsize will not be a fun task. They've needed to do it for years now. It means for them seriously getting rid of almost everything and living in an apartment for a while, something my mom has been adamantly against. It means dad has to clean out the garage and seriously purge the collections of crap he's been hoarding for years. Some of the stuff will be sellable, some not. They will also have to part with my dead sister's items...her bedroom set and her piano that's taking up space in a 3rd bedroom. Even though mom can't see or feel to play, they keep it because it was hers. I can probably get my SIL to buy the piano...to keep it in the family.

 

And in my mind...the worst case...I see them making no choice and staying in the same boat, possibly ending up homeless....if they make this choice, it will be theirs and theirs alone...but it's still hard.

 

Oh, and because of my husband's health issues this month caused by stress, summer work on my dissertation was zero. Yet again, another term I've paid for and accomplished almost nothing. I did get some research and a week's worth of work done...but it's miniscule in the grand scheme of things. Thankfully, my professor is a very kind man who is very understanding.

 

So. The proverbial rubber is meeting the road this week in a very unpleasant way. I'm not shirking the duties, just realistically looking at options. I am thrilled beyond belief that my husband is able and willing to finally have this conversation *with me* and we are making this decision together. I told him over a year ago that this wouldn't work unless we did it together...I'm so glad to see it finally happening.

 

I welcome your prayers and virtual hugs. This will be, at the best, unpleasant however you spin it, but it needs to be done.

 

On the bright side...the weather will be getting cooler and slaving in a garage will be more pleasant....

[Annarchy]

(((((C4C)))))

 

 

Missed you, but I see why.

 

I do not have any 'words of wisdom' to pass to you, but I will keep you in my prayers.

 

 

 

[snapshotmiki]

I'm praying for you also!

[Deb2of9]

I will pray that you and your husband have the strenght and the wisdom to get through this and that your parent's accept and come to see they really are beter off to make the change. It is a tough situation. I understand from their point of view that they may not want to change the life they are accustomed to. They may see it as a sign of failure or a sign that they are getting old and are not ready to face up to it. It may be that downsizing makes them think they are giving up their past life and maybe one step closer to a nursing home, that many older people associate as a place you go to die. So it maybe he isn't ready to accept the need, but it may be that he emotionally hasn't been ready for it. (Your husband taking a year longer than you to see this maybe part of the same thing.) no matter what thereasons behind it, the emmotional part of this will make it harder. All of you need prayers to get throgh it and I know that not only will I offer those prayers, so will all your friends here. May God give smooth this transition for your family and help to bring you all even closer through working through it together.

[Daylily]

Oh my! I know this will all be difficult for all of you. I pray things will turn out better than you think.

[gofish]

I had to have that conversation with my Mom so I feel for you. I will keep you in my prayers.

[themartianchick]

I worry that some similar tough decisions will need to be made regarding my parents in the years to come. It isn't easy...Sometimes we have to become the parents and that is awkward for all involved. I will keep you in my thoughts and prayers. There but for the grace of God...

[Virginia]

My DF is 88 and my DB, DS and I must soon do something. He will not like it and will be stubborn, but we are the "parents" now, and when he was he required much of us.

 

When they cannot take care of themselves, in whatever manner, others have to step it. It may be dreadful for you and DH, but the alternative of letting them end up homeless will be worse.

 

Do what you have to do, and do it quickly. The dread is awful.

 

Edited to add, I may sound heartless, but considering a nursing home, etc., is worse than handling a funeral, IMHO. The loving thing to do is make the wise decisions.

[Crazy4Canning]

Hi,

 

I just got home from lunch with my friend who is a social worker, thankfully, in the state care office where I will eventually need to end up. She handed me an envelope of papers, forms, and information and went over them with me. I was almost in tears for her wisdom and kindness. I was told to bring them back, hand them to her, and we would review them before they were submitted for intake, three desks over from hers. I thought there might be some trouble because my parents live in a different state, and because my dad just turned 65, there are none, thank the Lord.

 

The kicker though, will be getting them to sign over Durable Power of Attorney & Power of Attorney. I will be schooling myself in the differences of these and learning about Medicare and disability plans. As much as I cringe at having my parents in the same city, the care is better here.

 

Thanks for the kind words and thoughts and prayers. I'll continue to keep you posted. Looks like our chat with my parents will be scheduled for Thursday.

 

I also had a brief phone conversation with my dissertation professor who reviewed some very realistic deadlines in my lap. It was a great reminder of G-d's mercy and faithfulness.

 

[Jeepers]

I'm so sorry you are going through this!

You have my prayers and plenty of ----------> 's

[Christy]

((((C4C))))

Such hard work, such hard decisions. Life is not easy for you.

You're in my thoughts.

[Cat]

We were spared this situation, but unfortunately it was by a funeral. As difficult as it was, and continues to be, trying to put my mother into a safer place where her care was better assured would have been infinitely more difficult. She was stubborn, had definite favorites in her kids and played us all against each other, was stubborn, was never satisfied, was stubborn, and was taken over by creating drama whenever she could. Did I remember to say she was stubborn?

 

Be gentle but firm. Maybe it will be helpful to remind them how satisfying it might be to be sure that the things they love will be placed where *they* would like to see their loved ones enjoy them. My Mom always *said* she wanted certain things to go to certain people, but never took care of that. Consequently there is a lot of pain and some hurt feelings as one kid is trying to say Mom wanted *her* to have so many of the family heirlooms.

 

**Praying for your family**

 

[Christy]

Been brooding over this all morning. Knowing full well I mean it when I say I never ever want to live in a retirement home. They'd have to drug me and drag me down there. Only to discover the sewn-in-skirt-escape-ladder dangling from the window the next day.

And a fair few of us are most reasonable caring women (and men) but stubborn, know their stuff and won't put up with any nonsense.

It's not helping C4C, sorry about that. But the day my kids decide what's best for me is the day I hope lightning strikes me.

 

And yet, it may come to that. C4C, my heart hurts for both you and your mother. I can see her future being mine and can also see how this must be robbing you of your last strength.

[Deb2of9]

Been brooding over this all morning. Knowing full well I mean it when I say I never ever want to live in a retirement home. They'd have to drug me and drag me down there. Only to discover the sewn-in-skirt-escape-ladder dangling from the window the next day.

And a fair few of us are most reasonable caring women (and men) but stubborn, know their stuff and won't put up with any nonsense.

It's not helping C4C, sorry about that. But the day my kids decide what's best for me is the day I hope lightning strikes me.

 

Christy, I understand what you are saying and part of me agrees with you. That is the independent part of me that knows too well what life in a nursing home is like. I don't want to be that person that is told when and what to eat, where to go, and even when I can have a bath or will get up and go to bed. I don't want to lose my independence. However, my daughters and I have already had this discussion. They both have insisted that I will never go o a nursing home. In fact they are more likely to fight about who will keep me at their house. I told them that I am glad that they feel that way, but the moment I cause strife in their family or am so confused that they can't leave me at home safely, I want them to find the best nursing home that they can and put me there without guilt. I have seen too many families torn apart and have their peace of mind and health destroyed before they finally give in and put Mom in the nursing home. One of my residents now is 95 years old. Her 76 year old daugther was taking care of her at home. It was too physically demanding of her. It was affecting her marriage as her husband felt she should be put in a nursing home because of what it was doing to his wife, not because he didn't want to care for his MIL. It took her being hospitalized and needing more care than they could give at home to accept that a nursing home was better for her. There are times when families abandon their parents or other relatives in a nursing home, but there are also times when it is the best thing both for the one placed in a nursing home as well as those who were caring for them. My own MIL was cared for at home until the last 3 years of her life. It became unsafe as her Alzheimers advanced. She was safer in the nursing home, but her family still gave he love and support.

 

However, nursing homes aren't the only answer. Sometimes assisted living is enough. They have their own apartment, but only get the help that they may need whether it may be cleaning or food prepared for them. They can be monitored but left to live their lives coming and going just as if they are in their own apartment because that is what it is. Just they have someone available if they do need it. t is a good first step. Even a good first step instead of moving the parent back home, because they have more independence sometimes in the assisted living than by living by a son's or daughter's rules and feeling like they are impossing.

 

 

As for being stubborn, I have coined a phrase for my residents like that. I call them independently minded. They know what they want and want to do it their way. You have to work hard to make sure that they deside that your way really is what they want to do in the first place. If you can do that, it is a win-win situation. If not, you will have a battle on your hands. You will not win all of them with people who are independently minded, but you will win some and if approached right may be even most of the battles.

[Crazy4Canning]

After I posted yesterday, I called a friend of mine, to get her opinion on how to start the conversation and do it in a respectful way, for this is such a volatile topic, it would be terribly easy for emotions and bitterness to creep in. Her suggestion was to stress the "honoring your parents" and looking out for them, taking care of their needs in the best way possible. My mom does need far more care than Dad can give, and he is becoming a bit addled himself. We have too small a house and I know full well my limitations - financially, mentally, physically, and spiritually. I am not able to provide the care they need.

 

It's not going to be fun, but it has to happen.

[Mt_Rider]

 

MtRider

[Christy]

Such a difficult topic. It's about honoring parents, independence, letting go of responsibility or taking a task upon oneself.

Something on my mind a lot lately. Getting older a bit myself, you do think about such things.

 

I had a hard time accepting help from my son the last months. A second degree burn on my thigh and butt needed 3 times a day bandaging and ointment. My DS who is turning 29 today, had to change and bandage me. Kinda humiliating but we're cool. Had to be done, skin was all gone, risk of infection blahblahblah...

After a few weeks I burned a foot and again, he had to take care of me for the first few days. I wasn't happy but had to grind the teeth and bear it.

He did perfect, it's me who cannot accept be dependent.

 

We have said a few times that now he is living at home while attending uni, I take care of him by letting him live here and buy food when in the country. He wants to get a larger house once he works and earns and have space for me there. Never having to go into a retirement home or nursing home this means.

 

I discovered that he did not once complain about me not sleeping and going insane from that, no word about my butt bandaging and checks, he cooked and did some light cleaning and walked the dog.

And I discovered I am worse than I thought about accepting help when I'm not able to take care of myself. Not a chance I'd move in with him once I can't manage anymore.

 

Currently I'm going on a quest to find the last pieces of why I am this way. I've found them and will look into them next week.

It has to do with my father's experiences through WWII and how it shaped him and thereby shaped me.

 

Deb, while you have respect for independent thinkers, not everybody finds it in themself to be so. Credit to you and the folks to tend to are lucky.

I do admire C4C knowing she cannot take her parents into the house because she knows her limitations. It'd be easy to give in to guilt and/or feelings of love. No-one wants to see their parents in such a position. Self knowledge is a gift invaluable in this situation.

 

This thread made me realize that in a few months time when things are calmer here, I'll have to have a talk with Arik.

As much as he wants to take care of me when I cannot function alone anymore, I could not live with it.

I'm crying while writing this, both for C4C and myself. It's a hard discovery but better now so DS can adjust his plans and me think about what is achievable for me.

 

Perhaps by the time we reach that stage, the world may be a different place. If not, it may be best to set out clear lines of what yes and what not. Will think about it and put a few things on paper for him.

It's heartbreaking for a child, whatever their age, to have to decide about the parent(s).

 

C4C and others, I thank you for bringing this up and making me take action.

[TurtleMama]

C4C.... love and hugs and peace and prayers are all coming your way. I pray that the Lord will lead you as you have this difficult, yet necessary, discussion with your sweet parents. I think you've received some good advice, and God has provided you with people who know what they are doing to help you. I will be thinking of you constantly.

 

Christy...you have been in a difficult place the past couple of months. I can't imagine going through what you've been enduring. Your sweet son is a testimony to you as a mother...you taught that young man how to love, care for, and nurture those who are important to him. It sounds like you are on the cusp of a great transition in your way of thinking. That can be so hard. I'll be praying for and thinking of you as well.

[Annarchy]

(((((()))))))

 

 

As I read through everyone's responses, a flood of memories cascaded through my thoughts.

 

My Grandmother was shuffled every 4 months to one of her 3 children's houses. Then, when she could not deal with it any more, the put her in a nursing home. Luckily, it was a 1/2 mile from my house, so I visited her daily. In the three years she was there, they visited her once or twice. I got to know most of the nursing staff and they made sure I knew when she had a visitor.

 

Discussions about what to do when...

 

My mother "wants" to go to a nursing home... "So she doesn't have to do anything and everyone will wait on her hand and foot." Maid syndrome. My brother, has Power of Attorney now, and they will make the proper decision when that time comes. From the updates they give me, it will not be long, due to her strokes and dementia. She is only in her 70's and I am concerned about 'heredity'.

 

My MIL, on the other hand, wants to stay in her 'home'. At 80 she is completely cogent and discusses her hopes and alternatives with me, every time we get together. She has had her lawyer draw up the Power of Attorney, her will has been updated and all her affairs are in order.

 

Ideally, she wants a home health nurse to come in and care for her and when the time comes, she would want the nurse to live-in. If that is too expensive and/or her health is gone, she would prefer to be in an assisted living center. She has instructed us which ones in the order of her preferences. (The one her friends are in, is the one she has chosen first.)

 

I do not know what I will do about me. No children, no heirs. It will just be me. Our Wills are in place, what to do with the stuff we've acquired, etc. If DH outlives me, he will make sure I am taken care of. If I outlive him... I know God will take care of me.

[Crazy4Canning]

You have touched on some very tender points. I'm all for independence as long as possible, for my mom is perfectly sane (as much as one can be with her religious views) but only has 20% sight and is quite physically handicapped. Dad is still spry, but has begun to make some terrible financial choices like the Nigerian FBI scam and leaving $600 on the counter at Walmart (it was stolen) and not paying things.

 

I'm hoping today, to go, with respect and love, and present options. I have to remember that no action is also an option, something they've been doing for a while now.

 

Thanks for your comments and understanding. I'll keep you posted.

[Skagitgal]

My 89 year old step father fell and broke his hip; then had a left side stroke 4 days later. We, [myself & hubby, brothers [2], do not have the capabilities to care for him at home. He is a difficult, angry, obstinate, uncooperative patient. And those are his good days.

 

It has always been his intention to have his children take care of him. We cannot honor his wishes.

 

He is in the best care center we can afford, he is visited, called and looked after every day to the best of the staff's and our ability. The time is soon coming that he will need to be medicated to control his dementia rages. He simply cannot be a danger to himself, and to the people assisting him.

It has been a horrible journey to this point. It is not over.

 

His doctor helped us obtain a guardianship, and he has been declared incompetent. We have a Power of Health, and he did have a Living Will. Life is not always the way a person wants it to be. Everything we do is a decision made by the family with love for him and his condition.

 

So, I guess I am here to say; making decisions for parents is the height of emotional stress.Go through all the possible avenues of care. Document all the decisions, do this yourself. Write it down. We have been told to do this to protect ourselves. I wish this was not necessary. Constantly reassure your parent, that you love him/her them.

 

Somewhere out there, step dad has a daughter. She is an unknown person/problem. Thus the necessary precautions.

 

In North Idaho, step dad's care is $7000 a month. His 'sale of property' money will run out in another 7 months. Huge sigh.

 

We do not have, nor do my brothers have that kind of money. Step fathers care will be changed at that time. That is a bridge t we will cross then. There is much prayer, and much sorrow.

[Crazy4Canning]

DH and I just returned from chatting with my parents. Things went far better than I thought they would. First my mom commented on how tired my husband looked and we discussed why. We spun the situation that he was working too much and therefore we have to cut back on our budget and the remodeling dad helps us with. We stated that we really couldn't afford to support them financially any more. Dad seriously looked worried and Mom shrugged it off as "God will take care of us."

 

I said that the benefits for social services were better in our state and that I had spoken with my friend who was a social worker and gave me some paperwork to fill out. She had the authority to hand-walk the papers and not get them lost in the system. When we got to the Power of Attorney, I said that in order for me to help them the best, and be the best advocate, it should really be done. Without hesitation, dad began gathering paperwork, flipping through the POA and asking questions.

 

They know that we are looking out for their best interests and that they will not be left to live in a cardboard box. They will be able to keep their cat. True, they may be in a small apartment for a while, but vets and dual-handicapped persons do get preference. We assured them that we could change anything in the POA, for we just printed the most generic form we could find.

 

Dad was relieved. I could see he was trying to hide it, but he was relieved. He's been carrying this burden for a while now and he won't have to carry it alone. Mom was surprisingly upbeat because she will know more of the finances, because I will tell her.

 

It really couldn't have gone better. I know I wouldn't have made it without your prayers and hugs. I'm actually fighting a migraine now, from the stress relief. I'm sure it will pass with a nap.

 

I'll keep you posted about the further outcome and moving day. Thanks so much...you are worth more than you know.

 

[Deb2of9]

I am glad that things went so well. This is unfortunately the first of many "discussions" that you may have with them. It is helpful that they are able to still live on their own. Having them closer to you is a good plan. I unfortunately lived far away from my Dad. ( He lived in California, I live in Ohio.) Now it is just my step-mom there. I worry about her. I know that my step-brother and half-sister live there and probably will be there with her. She is 67 years old and taking care of her 88 year old mother with dementia. Unfortunately, this will wear her out and leave her more likely to get ill herself. She has said it is lonely because her mother doesn't do anything that she wants to do. She says the grand children never visit anymore. Of the ones living close to her, the youngest is 13. She is left alone unable to go anywhere because of her mother. That makes me realize that although she never mentions it, my brother and sister do not go there to help her now with her mother. Makes me wonder what it will be like when she needs there help. With the sole care of her mother as her responsibility, it will happen sooner than later. Her mother will wear her out without any help. Not to mention she had to retire to take care of her mother, so they are on a fixed income. I worry about her being so far away. That is why I think having your parents closer to you is a big help. It cuts down on one worry.

 

Decisions about your parents or about what to do about yourself when the time comes are hard. It brings out feelings of guilt, resentment, feelings of helplessness, and frustration. The personality of the person needing care and the caregiver all enter into it. Add to it that very lovable people can become difficult with dementia. Someone who has been independent and responsible for others all their life, often find it hard to submit to others helping them and making their decisions. I try to remember when caring for my patients what they were like in their lives before. What schedule did they keep? What were there responsibilities? What are their feelings regarding needing help? It all affects how they respond to being cared for. I try to give them the opportunity to live a life with as much independence as I can, but safety issues both for them and the other residents definitely affect my ability to do this.

 

Christy, I have great respect for you seriously considering whether you wish to be cared for by your son. Understanding the kind of patient you will be and whether you want your family to do it is an important decision. We must decide what we want for end of life care as well as after we are gone. I consider end of life care, not just when you are dying, but when you can not longer take care of your self. We all should look at this and make our wishes known. However, we have to also accept that circumstances in our families lives may not make it possible to care for our families to care for us in their homes or ours no matter how much we may want that to be the case. Discussing it with your family ahead of time is important.

 

Annarchy, what your grandmother went through is a shame. It is good for children to care for their parents, but shuffling them from home to home is a delicate thing. It can make them feel like they are unwanted. It is as bad for them as it is for a child shuffled between parents for the sake of shared parenting. It can be done, but you have to make sure the one going from one home to the other feel wanted and not put up with.

 

Too many people do think that they when they get to a nursing home that they will be taken care of and not do anything for themselves as your Mother thinks. They are really mistaken as the nursing homes have to by law preserve as much of the independence of the person as they can. We have to make them try to help with all activities of daily living. Unfortunately some to get away with being waited on if they down right refuse, but we really try to not be their maids, but instead their helpers. It is better for them in the long run.

 

I believe everyone should live on their own or with family as long as it is possible, but for some long term care is the only smart answer. It is a tough decision that often is left for the children to fight among themselves to make decisions for their parents. Discussing this in the present is better than waiting until a decision is forced upon you.

[Christy]

C4C, this news is already a small burden taken from my heart. The conversation went well, your parents seem cooperative, the outcome a lot better once the process gets in motion.

You did this with delicate care and respect. Please let me pay respect to you.

[Jeepers]

C4C, I just breathed a little sigh of relief for you! I'm so glad it went well.

 

I had "the talk" with my son a couple of years ago. He said he would always take care of me and never put me in a home. I know he means it from the bottom of his heart. He's a mommy's boy...in a good way. But, I watched my aunts try to take care of my grandmother (their mother) who was suffering from dementia. One person/family cannot do it all. I saw the sweetest woman up all hours of the day and night roaming the house; become violent, spiteful, roam the neighborhood in various degrees of clothing and would not be reasoned with. I'm talking about full blown dementia not just forgetfulness. The thought of my son changing my diapers...

 

I told him if I get to that point I want to go to a facility where I'm taken care of by professionals. I told him I may cry and beg not to go but don't fall for it, that isn't really me talking. I may not even remember who he is at times. I reminded him that’s why facilities have a rotating staff 24/7. One person can't do it. I would never put him through the pain and guilt of trying to make that decision for me. I already made it and it's in my will.

 

I will stay home as long as possible and he will come live with me if he wishes but when the time comes he will know and will follow my wishes. I know it will break his heart but he won’t have to second guess my wishes or carry the guilt the rest of his life.

 

It wasn't an easy talk but better now than later.