Giving Care — Part 1 of 5
Posted by Gail | Filed under Money & Family
Today begins a series on caregiving. It’ll be five parts, every Tuesday for the next few weeks. As more of us are faced with the issue of having to deal with an elder who needs help, caregiving issues become more to the front of our lives. Yet we seem not to be talking about it a lot. There are specialist who focus on caregiving and how to do it well, but the popular press seems to be avoiding this topic like the plague! Hmmm. So, here we go.
I got an email from a childhood girlfriend in Jamaica not too long ago that got me a’thinkin’. She wrote:
This morning I was reading “when kids move back home”. I wish you’d write something about when elderly parents have to move back in with families. I don’t know if this is happening in Canada but in Jamaica it’s happened with all my friends. The problem is not only the financial and emotional strain but also the interaction with the other siblings who all have opinions on what you’re doing or not doing for the parent and whether you’re taking advantage or not. I have a friend, a couple, who have moved back in with his mother who lives in a big old house. They don’t pay much rent but maintain the house, which takes a lot, pick up all the bills and act as chauffeur, friend and everything else, only to be accused of “taking advantage” by the other siblings. It is a real problem here and of course will get worse as the economy worsens.
Hey Debs, it sure is an issue for Canadians! Believe it or not, about six million Canadians depend on a family member or friend to help them make it from one day to the next. According to Statistics Canada, one in five Canadians 45 years and over provide care to a senior. While 62% of these primary caregivers have been providing care for at least three years, 20% have been providing it for more than ten years.
The initial adjustment to having a mother, father or some other relative as a living-mate is never easy. One woman I interviewed for a story several years ago described it like this:
“She took over my life, my household, my friends. She wanted to be in everything. I felt I couldn’t lock the door to my own apartment in our duplex because I’d be locking her out. She always took that unlocked door as an open invitation. She was pushing my buttons. We were having a rocky relationship because we seemed to make small things into huge arguments. What I learned is that you can’t get into arguments dealing with someone of my mother’s age. I felt guilty when I wanted to go out for dinner with my husband and she’d be pissed off because she wasn’t going too.”
Despite the fact that life as a caregiver is no walk in the park, loads of people are determined to keep their loveys at home to the end. She sees it as a matter of trust. But there are things you can do to ease the weight. Make sure you:
- involve your loved one in as many aspects of planning as possible.
- find out what is available within your community to help you take on this task so you can have some relief and not burn out.
- maintain close contact with your loved one’s doctors – but don’t take everything a doctor says as gospel. Question the things doctors suggest. Decide for yourself if that’s in your parents’ best interest at this stage of their lives.
- discuss end-of-life issues and preferences so you can honor your loved one’s wishes.
- don’t try to force them to do things because you feel it’s in their best interest.
Taking on the role of caregiver often brings strong emotions including denial, resistance, exploration and commitment. Some phases take only moments or days to complete while others may last much longer. Knowing what to expect can help you cope:
- Denial: If you’re thinking “This isn’t happening,” or “This isn’t going to affect my home life at all,” you’re in denial. A sense of panic, anxiety, or avoidance are pretty typical.
- Resistance: If you’re thinking, “Why me?” you’re experiencing pangs of resistance. You may doubt your ability to cope, be frustrated by what you’re having to deal with or be distressed by your new role.
- Exploration: If you’re thinking “ Maybe we could renovate the bathroom to be wheelchair accessible” or “Home support could help so I can continue to work,” you’re exploring y our options.
- Commitment: Once you’ve accepted your new role, making plans based on your new circumstances, you’ll feel more in-control of your life. You’re also willing to share responsibility with others who can help.
Taking on the role of caregiver can also bring familial conflict. Caregivers often find that any problems that were around when the family was growing up turn up again in spades. The distinction between “girl” work and “boy” work rarely changes, which is why it falls to women to be caregivers far more often than to men. Siblings end up angry over the care, or the perceived lack of care, of a parent. They get ticked off over money and belongings. And sometimes the squabbling is so bad there’s never a resolution.
If your family is determined to avoid this kind of conflict, start by sitting down together and talking through what needs to be done. Clarify each person’s strengths, and the level of involvement each person wants to have. Don’t wait for people to say, “Tell me if you need anything.” Assign duties to each member for the family. You may need a third party to help walk you through some of these decisions if there are childhood grievances that may still be rearing their ugly heads. It could be a therapist or a social worker or someone from your local religious organization.
Make sure you keep talking to each other. Regular family meetings, whether that be dinners or a monthly coffee-break are good ways to update sibs about a parent’s condition. For those who are further away, use e-mail messages, letters or conference calls.
Don’t fall into the trap of taking it all on and then whining when no one wants to get in your way. Listen to their opinions and be willing to compromise. Let them know that their help really is wanted and needed. And ask siblings to take care of specific tasks. Even those who live far away can help by making regular check-in phone calls or locating services.
Remember: “You can’t do it all. You’re not Superman you know!”
July 7, 2009 at 8:50 am
I’m so glad to see this post Gail! My dissertation research was on the physical and mental health of caregivers, and I know that one day, one of my aunts and my parents will require some support from my husband and I, so I think about this a lot. I’ve often thought about how the financial piece plays a role in these factors. If you have savings and live below means, you can afford to take advantage of the supports that make life better for everyone (e.g., respite care, day programs, equipment/renovations). Burnout and burden are real factors that can negatively influence the caregivers’ health in these situations. Like many area of life, while money can’t buy happiness, having your finances in order can certainly pave the way to a less stressful and more peaceful existence!! Thanks for putting this on everyone’s radar.
July 7, 2009 at 8:50 am
This is absolute gold for advice, Gail. People often don’t think things through from all angles.
As a nurse, I would like to add my 2 cents.
There are community resources that you can access to help your parents, but they come at a cost (at least in BC) which is assessed on your parents ability to pay. Please be realistic. The money we save for our retirement is not merely there to pass as inheritance, a lot of it may need to go to physical care!! Veterans get most things covered, so just check with your local health unit. You can rent tub bars, walkers, wheelchairs, etc from your local Red Cross.
If your parents live alone in another city, do not assume they are okay because you call them regularly. They may be secretly drinking (not as uncommon as you may think), they may not be able to keep up with cleaning the house, their clothing or themselves due to weakness or dementia. You need to visit to check things out.
And, finally, please look into ( earlier rather than later ) into the long term care facilities near you. It is harder than people think to care for a failing relative and the waiting lists are very long. Get your family member’s name on a list so “the system” knows about them and the community nurses can keep an eye out for them.
Elderly people need friends and peers, try and enable this socialization, as well.
sorry I babbled.
I can’t wait for the other parts of this blog. Very timely!!!
July 7, 2009 at 10:22 am
A very timely post for me, as we are in the midst of renovating our home to add a wheelchair ramp so my MIL can move in with us. We feel pretty prepared since my Mom is already here — she’s lived with us for 7 years.
I especially appreciated the reminder to not wait until people say, “What can I do to help?” We’re working on a schedule involving my husband’s sibs, and we rely on home care too as well a some extra paid help.
One other thing we’re doing that people might find helpful — we’ve asked a family friend who is a minister to visit with my MIL alone on a regular basis, and encouraged her to ask my MIL how things are going, if there’s anything we can do to improve the situation, etc. I think it’s a benefit to everyone if a person who needs care has an advocate. It must seem like a rather powerless position to be in — since our elders have been independent and caring for others all their lives.
Part of what makes what we are doing possible is being debt-free — no mortgage either. So while we both earn money, we’re not locked into full-time jobs.
Good luck to all who are caring for elders, in Jamaica, in Canada, or elsewhere!
July 7, 2009 at 10:24 am
Very informative blog. I can’t wait for the rest in the series. I hope that you spend some time discussing the finances of the situation. We all have our assumptions of others financial situation – and more often than not those assumptions are incorrect.
I also hope that you help us identify when we need to step in. This is a difficult topic and one that my spouse and I discuss often. My spouse has some experience with it so we can learn from that. But when to get involved and how isn’t always easy to answer.
July 7, 2009 at 10:35 am
I am looking forward to this series as we need all the help we can get.
I am 32 with 2 kids and my mother passed away 6 years ago. From the moment we lost my mother I had to take over as caregiver. My father drinks when he is alone and recently to the point of being hospitalized. We let him stay with us once released…that was 4 months ago. We finally told him we just don’t have the space so he went home and started drinking again. We do everything. Pay bills, clean his house, make appointments etc. He basically has given up and left it up to my spouse and I to take care of everything. My father is only 61 and in good health and at this point shouldn’t even need care. The whole situation is very frustrating and I am burnt out already. I have no idea where to go to get help. Hope this series provides some ideas.
July 7, 2009 at 10:39 am
Perfect timing as always.
My Mom was diagnosed with dementia (Alzheimer’s) a few years ago at age of 70 – other than that she is perfectly healthy – in the beginning it was phone calls in the middle of the night saying that someone had stolen an earing, or someone was moving her items around in her home (she lived alone – dad passed away 15 years ago). Her vision was poor and had her drivers license pulled from her doctor. I had to take a lot of time off work to drive her around to various doctors appts, grocery shopping, running up to her place in the middle of the night to calm her down. I had suggested she move to a nice retirement home but she argued it until i really gave her no choice. I was terrified she would get lost on day – or burn the house down – she was not taking good care of herself nor eating properly – the final straw was when she stopped taking her blood pressure medication because she couldn’t remember if she had taken it. Her house was messy almost dirty and refused to get a cleaning company to come in and help her – she was confused and didn’t want to be alone – I was driving across town everyday to check on her.
The financial burden on us was enormous. Here my Mom was with a lot of disposable income yet not once did she ever offer to pay for my out of pocket expenses or even parking at the doctors office.
I would always get a guilt trip from her bringing up the fact that she raised me and obviously my husband did not provide well enough for me if i couldn’t pay to drive my mother around (and loss of my wages while I took the time off and time away from my family I was being torn in half). My Mom and I were not close and I was really starting to burn out.
Deciding with her doctor we moved her to an assisted living retirement home and now we are all happy.
Fast forward a few years – she now has full blown dementia – she is a different person and a nicer person – I now enjoy spending time with her when we visit her at the assisted living facility where she now lives. I manage her money as POA (Power of attorney).
I am so thankful that my father was financial savvy and ensured there was enough money for my mom to live where she is – it is not cheap – it is not a palace – it is a safe comfortable facility who ensures she is clean, fed, happy and secure- I honestly couldn’t have had her live with me or our family – I don’t know what I would have done if there was no money for her to live where she is living.
It really isn’t cheap and I worry that I may not have enough funds in my savings to pay for a place such as this if either my husband or I are stricken with dementia and leave my kids with the same burden of choice.
The rate per month is $4300.00 a month – which is not the most expensive nor the least expensive for the assisted living homes in our area (west of the GTA – Ontario) – she is not ready for long-term care / nursing home yet –
what would have our choice been but to have her live with us if the funds were not there. I would have had a nervous breakdown – my kids would have been miserable – I would be miserable and it probably would have destroyed my marriage- she couldn’t live on her own anymore.
I can see this being a bigger problem for the youth of today – people do not save enough for retirement or cases such as this…….
Everyday I think thankful thoughts of my Dad who enabled this to be a reality where when I visit my Mom I am a visitor and not her caregiver and resenting her.
Sorry to make this a long post but just had to share my story.
July 7, 2009 at 11:26 am
Emma my dear, I’m living exactly the same story. My mom passed away 11 years ago and sincethen my father’s alcoholism went from manageable to insane. When he is with us is not allowed to drink and he does pretty good, when he gets around his drinking buddies its game over.
He has seizures when he stops drinking and I actually now have anti seizure medication on hand for when he comes to stay with us. Its beyond frustrating.
What can I do for him? He is what he is and he is still my father. I have learned to enjoy the sober times with him and not feel responsible for him when he’s drunk. There is only so much I can do for him. Just because he’s family doesn’t mean I will enable him in his disease.
Hugs to you Emma, hang in there!
July 7, 2009 at 11:27 am
Oh Gail, what a timely blog!!
My mother is suffering from mild to moderate dementia and we have tried to find out what can be done for her within the community. In Ontario, we have spoken with the people from the Ccommunity Care Access Centre. My mom is not able to be put on a long term care list yet. She is too able to care for herself – washing, toileting, dressing etc. and so doesn’t hit the base need area for their intervention even with the safety concerns that we have for mom in her apartment. She has had floods, and has burned many a dish and ruined now 3 microwaves. She has already had a hip replacement and now that she is fragile (she has lost significant weight – without it being diabetes), she could have a fall which could finish her. This seems to be irrelevant to CCAC. I guess she needs to be far worse to qualify for any assistance from them. They would like us to arrange for caregivers for her without her ever going on to their roles – that is until she is significantly worse off. It will depend on how fast the demetia continues as well.
However, she can get involved through their recommendation for day care programs. Hopefully within the next week we may be able to set this up for her. We don’t know if there is room in any of the programs for her and this may be one of the determining factors. Cost is quite acceptable – $24.00 per day for a full day’s activities and a meal. Mom does need to talk with other elders. She has always been a strong woman – not a mixer, but now she needs to be with people almost all of the time. The problem is the transportation to the other end of the city. There is a bus but it will be a long voyage with picking up other people along the way. Mom would probably be the first to get on the bus. It may tire mom out but we have to give it a try.
As to Colin’s remark about knowing when to step in financially – whew!! What a nightmare for me as I’m now legally her Power of Attorney for everything – care provider for financial as well as for her personal needs. I’ve not wanted to deal with this subject for the last six years. I didn’t do anything about it except to remind mom not to spend foolishly which she took in a hostile fashion.
My sister lives with mom (part of a deal to provide support and care when necessary while my sister figured out her life after her divorce). It has been difficult for my sister – maybe even nearly deadly for her. She is having extreme stress with her workload (which has been increased formally with her manager resigning and the additional workload has been dumped on to her without preparation, training or financial rewards). All of this in addition to her own personal problems with needing to find her way financially out of a horrendous divorce settlement which has cost her nearly everything. In addition, her daughter is now living with her at our mother’s apartment. Talk about the problems which can exist with 3 generations and you have it! Mom is now very needy, my sister is exhausted and her daughter is just there suffering from her own emotional problems and is not really that helpful.
How is the financial coming into this? Well, mom has been involved with buying useless things for many years – by mail – from Publishers Clearing House and only when she finally told me that she was having financial difficulties, did I step in. With the dementia, it was as well difficult to talk with her about the problems. I finally had to call PCH and have her accts. (4 of them in different names – frozen). Then my sister and I had to look for all the paperwork to locate items which could be sent back. This took a month to organize and try to complete. Oh, mom wasn’t happy – let me tell you but it finally had to be done and I had to bite the bullet and do it. Talk about working with a bull in a china shop and that is mom.
One way to give mom some dignity and to not make her feel as though she couldn’t run her own affairs, was to let her write cheques and then not to provide her with stamps. All of her utilities come out of her banking automatically, so she needs to only write a rent cheque each month. I would look over the things which were to be eventually put into envelopes and see what she was going to pay. Even with talking to her – she was still buying things and not recognizing that she was in a serious financial way – owing nearly $10,000.00 to her secured Line of Credit. Otherwise, she was giving her money away to every charity on the books. She would receive 10 requests a month. I had to draw a line and not send any of the envelopes on to the charities at all. She couldn’t afford to live and to pay back her LOC. That was the time when I really realized how badly she was doing with her thought processes. She would keep writing cheques even when she didn’t have the money to cover them. Yes, there is a time to step in and it hurts like hell to do so. You never want to think that it will be necessary to take control of a person’s financial affairs but in this case she wasn’t thinking of her own needs.
A long story and a problem one. I hope Gail’s blogs will be useful to all in this situation.
July 7, 2009 at 11:47 am
Would AA or Al Anon be of any help?
July 7, 2009 at 1:35 pm
Some very intense stories here!
I wonder if the problem will only get worse, as my parent’s generation sems to be the first to live off credit and never save anthing. “It will work out” they always say.
My mom has already spend more than half of her retirement buy-out package in just over a year (she’s only 56 now!). Her husband still works and will be for some time, but he is a shopper too, and not the healthiest man, he is on sick leave from work right now…. oh the stress!
My MIL is on disability welfare (by anyone’s standards it is a tiny living allowance and only her most basic needs are met). Her condition is slowly deteriorating, and we know that its only a matter of time before we will be the primary caregivers and decision maker since my husband is her oldest son and lives nearest to her.
My FIL is still working hard, he is renting his current place and is not the “saving type”. To put it bluntly he does NOT take good care of himself, serious health issues are only a matter of time.
These “grown ups” in my life have no savings, no pensions and no plan for their futures…. Sometimes I feel like my husband and I are trying to save up for OUR old age, our young kids’ eventual education AND our parent’s old age!!! It’s impossible!!!!!!!
We couldn’t turn our back on our folks, it’s just not an option, so I will be following this set of caregiver posts very carefully!
July 7, 2009 at 4:45 pm
Emma/Christy, I STRONGLY suggest Al-anon for yourselves, where you will find that you are not alone. No one will tell you to abandon your father. They will help you cope. (Not AA, that is for the people who do the drinking)
July 7, 2009 at 6:06 pm
My mother died of colon cancer almost two years ago. Just when we thought our lives were getting back on track, my dad suffered a stroke last year. The months following the stroke were very tough on my sister and I. First we got a rude awakening when we found out about his $90K debt (he had kept this hidden from all of us by diverting mail from his creditors to a PO box), then we had to sell his van and home. And we had to find him a new home.
Imaging trying to take care of a parent, trying to make some kind of future plan for dad AND trying to sell a house in a crappy market. On top of this, my sister and I teamed up to pay off my dad’s debts but even this was a struggle as we had just bought our own homes just months before the stroke.
My dad is ok now. He needs a cane, can’t drive and is blind in one eye. He is also living in a pricey retirement home because he needs a bit of assisted living help. Thankfully the house did eventually sell and the money was used to wipe out his debt and pay for his current home. Still, the money can only last so long. He doesn’t qualify for long-term care facilities (plus there’s a waiting list for those) now so a retirement home will do. My sister and I have set up a joint account where we each contribute some money each month to help out dad when his current cash flow runs out.
We’re fortunate in that his retirement home is a ten minute walk from our homes. And he sees one of us each day of the week. People wonder why we don’t buy a place and all live together. But as many of you have pointed out already, taking care of an elderly parent is a lot of work. My sister and I are in our 30s and weren’t ready to take on that full-time commitment. We have no regrets about our decision and so far it’s working.
What have I learned from this?
- Get a will and power of attorney done for your parents. These documents helped me gain control of his finances and take care of him in a more efficient manner. It was one less thing to think about and it allowed us to focus on dad.
- It’s ok (and crucial) to take time out for yourself. In the beginning I felt guilty for “taking a day off” from dad. Even though I knew other family members chipped in to help, it still got to me. Everyone needs a break. And besides, I figured out that I’d be no used to him if I was unhappy and stressed out all the time.
- Be realistic. Before making any big decision (ie. choosing to become a full-time caretaker) really think about how this will impact your life and that of your parents. We all try to be heroes but in reality it’s not possible. Talk with your family and other community resources to determine the best solution for everyone.
July 7, 2009 at 6:18 pm
There are some challenging and wonderful stories out there.
Lucky for me, my mom is in health care (she’s a nurse) so she’s already aware of elder care issues, she is financially savvy, and she’s already done up her will. I will one day talk to her about her Living Will and Advanced Directives so that we can respect her wishes when she is no longer able to make health care decisions for herself. It’s always better to have the discussion when your parents are “of sound mind and body” and when people can think clearly rather than when an emergency arises and everyone runs on emotions.
Just to throw in another perspective about money and elder care… sometimes I see that adult children have their parents living with them for the purpose of having access to their parents’ pension cheques. These adult children refuse to place their parents in a nursing home or other care-giving facility because then they would no longer have this “free” money. It’s frustrating to see it happen and there is very little I am empowered to do to help an elderly person in this situation.
So to all of you who are giving your best to your parents or in-laws (whether you care for them personally or you have other arrangements) kudos to you!
July 7, 2009 at 6:57 pm
My parents have their financial ducks in a row, with wills, POA’s ect. Mom and I joke that I am to pull the plug, but not too soon. My MIL has serious osteoporosis, lives alone 8 km away, and isn’t interested in care facilities. So far she can keep her home (mostly) clean, but she does not eat very well. She cannot do yard work any more. It is very hard for us to continue to respect that she is an adult who can make her own decisions when she chooses to live on bread, mayo, and cheeze whiz. (No teeth, won’t get them) All I can do is “forget” to bring her an axe when she wants to have a fire in the woodstove.
July 7, 2009 at 7:58 pm
Kathleen, I suggest that you have that conversation with your mother today. One never knows when illness will strike.
August 21, 2009 at 5:37 am
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